Kelley Connors

This post was written by Kelley Connors, President, Founder, Real Women on Health!

Patient advocacy has a new meaning for me – for years I was only looking at one piece of the advocacy puzzle. Today, I see the whole picture from the patient as well as organizational standpoint.  One’s view certainly intensifies as your passion rises when your own family member or friend needs help navigating the healthcare system to receive the right care.

For years, I’ve been behind the scenes of educational campaigns that patients benefited from with pharmaceutical industry support; think Go Red for heart disease awareness among women, and Susan G Komen’s grassroots efforts to increase public awareness about the importance of self-breast exams and mammograms.  With women’s lifetime risk of breast cancer being one in eight and heart disease the leading cause of death among women, I’ve been hired as a PR specialist to develop advocacy campaigns for companies to help women gain the knowledge they need to effectively prevent and treat a myriad of women’s health conditions.

But, things change when it’s your dad who has chronic myelogenous leukemia (CML).  And, you start to dig in to find out as much as you can about the condition, how to pay for a drug that costs $8,000 a month, and how to coordinate care when oncologists – as valued as they are – may miss concomitant conditions that impact how a patient feels and responds to CML treatment.

Here’s what I’ve learned:

Being an advocate is about being curious, passionate and a seeker of information. For example, patient medical records are full of data that will help you close the gaps in care, should you or your family member need hospitalization.   Can you access your medical records quickly should you need to make a life or death decision?  The federal Health Insurance Portability and Accountability Act, which governs access to medical records, gives hospitals and doctors 30 days to respond to a request for medical records, although some state laws provide for a shorter time frame, and in urgent situations, such as a transfer to another hospital, it’s customary for hospitals to move more quickly.

Be prepared to make your request in writing and, to shorten the time frame, ask your physician’s office (the new physician in the case of patient transfer) to request them.

Remember, medical records are yours and they contain the doctor’s notes and instructions as well as diagnoses that often are communicated but likely not “heard” or “understood” by the patient or family.  

One way to get your medical records more quickly is to seek out providers who use electronic medical records so the records can be e-mailed to you. Some providers even have an electronic portal so you can read your records anytime you want on a secure Internet site.

In summary, it’s one thing to work in healthcare PR, creating the patient advocacy programs for large pharmaceutical companies but when its your family member who needs help, the word patient advocacy fills in with passion and purpose which is important but never enough.  You need to understand the system and how it’s broken to identify the gaps.

From a PR point of view, patient advocacy often helps pharmaceutical companies educate patients about a specific disease or treatment, but don’t forget their motives. That’s why is you ever need a patient advocate “on the ground”, it would be a good idea to check out Disruptive Women Trisha Torrey’s web site, AdvoConnections. (http://www.advoconnection.com/index.asp)

She is the ultimate patient advocate and has a wealth of personal experience, knowledge and connections to help you find and receive the best care possible for yourself or family member.  This is what I am learning is the meaning of patient advocacy.

Related posts:

1. Patient Advocacy – When Disruption Creates Win Win Win
2. Calling Patient Advocates–Share Your Story
3. Professionalize Advocacy – The Time is Now

Imagine if businesses – and business leaders – could help beat cancer. It may seem an unlikely match, but I believe they can.

My organization, Global Summit of Women, and I have taken on the challenge of cervical cancer based on one key fact: cervical cancer is almost entirely preventable. And yet it continues to strike at least 500,000 women each year, killing more than 270,000.

To me, as president of the largest economic forum for women, these figures are outrageous. Women are at the heart of our global economy. Whether they are tilling a field in Uganda, running a Laundromat in Paris, or leading a Fortune 500 company in California, our economies are only as strong and healthy as they are. Global economic growth, especially in developing countries, depends on empowering women to control their own economic futures. Without health, this is impossible.

This is why thousands of leaders from corporate, government, and non-profit sectors are joining me this month at the 2010 Global Summit of Women in Beijing, and lending support to our Global Consortium of Women to End Cervical Cancer, the closing event of our three-day gathering. Year after year we make it our mission to ensure that women leaders spread the word about cervical cancer prevention, focusing on efforts to increase access to the screening and vaccines necessary to make cervical cancer the first cancer the world gets rid of for good.

The alternative is dire: If we fail to take real steps toward preventing cervical cancer, the number of worldwide diagnoses could reach 700,000 annually by 2020. Most of these will be in developing countries, where 80 percent of cases occur. Cervical cancer tends to strike women in their prime, and because so many cases in developing countries go undetected until they’re too severe to treat, the toll cervical cancer takes on economies is astonishing.

These figures are particularly egregious because cervical cancer prevention does not depend on future technological discoveries; we already have everything we need to do the job. The cause of cervical cancer is known: human papillomavirus (HPV). Screening for HPV can help identify women who are already at high risk for cancer, allowing them to be treated early as necessary. Vaccinating girls against HPV can help prevent cervical disease as today’s young generation become women. Together, these tools form a powerful defense arsenal.

Even more promising for developing countries, researchers are creating a new HPV test that doesn’t require running water, electricity, or highly trained laboratory professionals. It would allow women to be screened and, if necessary, begin treatment on the same day. Technologies that can help broaden access to women in low-resource, rural areas promise to bring about a turning point in the areas hit hardest by cervical cancer.

So if we agree that wiping out cervical cancer makes sense, and technology isn’t the problem, then what’s stopping us? The global community needs to prioritize the cause, and global business leaders, particularly women, can be the key to making this happen. We need to recognize that cervical cancer is not merely a health issue, but an economic issue that impacts development enormously. As such, governments and donors must commit the funding necessary to ensure that infrastructure for implementing screening and vaccination technologies is available and affordable. Organizations must encourage sustainable public health programs to reach all segments of a country’s population. All women must take action to protect themselves and their daughters.

Cervical cancer is one issue on which we can make unprecedented progress now and leave a legacy of a cervical cancer-free world. Over the past few years, groups such as the European Women’s Management Development Network, the International Federation of Business and Professional Women and the Inter-American Commission of Women have all been a part of the Summit’s Consortium of Women to End Cervical Cancer. This year, the All China Women’s Federation, the First Lady of Tanzania, and Sun Network co-owner Yang Lan are joining our call to action. We all have an extraordinary opportunity to make cervical cancer history, and we must not let it pass us by.

This blog entry was originally posted at The Huffington Post on May 17, 2010.

Related posts:

1. What the new cervical cancer screening guidelines mean for women
2. Taking A Stand Against the U.S. Preventive Services Task Force’s “New Breast Cancer Guidelines”
3. Ovarian Cancer: Actress Kathy Bates Shares Her Story

Click here to see the full announcement. If the image in your browser appears small, click to enlarge.

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1. The State of Health Reform Since the State of the Union
2. Estrogen: The Great Debate
3. Disrupting Health Research with Open Source

Kelley Connors

This post was written by Kelley Connors, President, Founder, Real Women on Health!

Life has a way of taking its twists and turns and ups and downs…and soon enough we’re over 40 and wondering when, if ever, we’ll “hit our stride”.

Self-acceptance and self-esteem are closely related…and arises as you learn that you are perfect with all your accomplishments, victories, and … vices. Self-acceptance is as essential to one’s well-being as water is to a blooming flower. Have you ever re-framed your “inadequacies” and lack of self-acceptance into a humor and candor….where laughter has a place in healing and well-being?

Move over Candace Bushnell… and meet Amy Cohen, a New York Times Best-selling author of “The Late Bloomer Revolution”. Amy says it well here, “I like to think of myself as a late bloomer, one who will, however, late come into bloom.   Although when, and if, I bloom remain a mystery. I wish I knew how to speak a foreign language fluently.  I wish I knew how to cook a simple roast chicken, or that I had read the Idiot whose main character sounds like someone I can relate to.

By 35, Amy learned to ride the bike of her life. Click here to take the Late Bloomer’s Quiz and join “The Late Bloomer’s Revolution”.

Speaking of living life on our terms…learn what’s going on “inside the beltway” and take control of your healthcare with our radio show’s Washington, DC correspondent, Robin Strongin. A true woman’s advocate with the connections to make it happen, she reveals the knowledge that will empower us women to become our own best health and wellness advocates.

Robin is the founder of Disruptive Women in Healthcare, a thriving blogging community of high powered women who are driving innovation in healthcare with thought-provoking ideas and commentary on the nation’s challenges. This week, she’s disrupting the status quo with a grasp on why you can’t take clinical trial information at face value…what you need to ask your doctor to stay in control of your health and well-being.

Join Kelley, Cassie, Robin and Amy on Real Women on Health! live talk radio this Wednesday, May 5th at 8 pm – 9 pm EST on your computer at www.wstcwnlk.com streaming live or, if you live near Fairfield County, Connecticut  listen “on the AM dial” at 1350/1400.

This blog entry was originally posted in Real Women on Health! on May 3, 2010.

Related posts:

1. Disruptive Women on the Radio…with Real Women on Health
2. A Taboo Explored: Cancer, Sex, and Intimacy
3. On the Meaning of Patient Advocacy

Orphan Diseases – Bellwether of Health Care

“The only people interested in rare diseases are those who have them, and that’s not a lot,” an editor once told me when rejecting my proposal for a book on orphan diseases.

In reality, nearly thirty million Americans – one in ten – suffer from some 7,000 rare diseases, making them collectively very common indeed.  Though they differ wildly in their causes and manifestations, they share many characteristics in terms of the uncertainty, isolation, and costs imposed upon sufferers and their families, the challenges they pose for our health care system and sense of social responsibility, and their potential value to medical research.

In the United States, orphan diseases were defined by the Orphan Drug Act of 1983 as those that affect fewer than 200,000 people domestically.  This landmark legislation offered incentives – tax credits, a period of market exclusivity independent of patent protection, research grants – for manufacturers to develop clinically valuable treatments that would not be economically viable in the normal pharmaceutical market.  Previously there had been tragic instances of known, potentially useful therapeutics never taken to market, or others of already proven effectiveness that were withdrawn, because they did not meet a drug company’s threshold of profitability.  The definition encompasses some familiar disorders, such as cystic fibrosis, muscular dystrophy, hemophilia, Huntingdon’s Disease, and Crohn’s disease, along with thousands of much rarer conditions, including fibrodysplasia ossificans progressive (FOP), Jumping Frenchmen of Maine, and Sakati Syndrome, or acrocephalopolysyndactyly type III, which for many years was represented by a single patient in Saudi Arabia.

In less than thirty years since passage of the Act, more than 300 orphan drugs have been approved for market.  Some are produced by large pharmaceutical companies.  The biotechnology industry also benefited tremendously from the orphan drug market and its incentives.  In addition, as one pharmaceutical executive told me, big drug companies may need billion dollar drugs to support not only R&D but also massive corporate infrastructures and the sales and marketing machinery, but a small company aiming at a well-defined population, with a small number of specialized physicians and facilities, patient advocacy organizations, and unusually motivated patients, can get by quite nicely on mere tens of millions of dollars in revenues.

Research on orphan diseases is often unusually productive.  William Harvey, who discovered the circulation of blood, wrote in 1657 that nowhere does nature more openly “display her secret mysteries than in cases where she shows traces of her workings apart from the beaten path; nor is there any better way to advance the proper practice of medicine than to give our minds to the discovery of the usual law of Nature by careful investigation of cases of rare forms of disease.”  Sigmund Freud more generally stated in the New Introductory Lectures on Psychoanalysis that studying abnormal behavior was valuable because the broken structures of mental patients’ minds were as revealing as the fracture planes of a shattered crystal, which yielded clues to otherwise invisible molecular structures.  Rare diseases, often resulting from a single gene mutation or flaw in one step of a metabolic pathway or developmental process, may reveal stark outlines of underlying mechanisms difficult to tease out of complex, multifactorial diseases like hypertension, diabetes, obesity, or cancer.

Clues provided by rare diseases like Fragile X syndrome, Gaucher’s disease, and tuberous sclerosis complex provide insights into the mechanisms of more complex neurological disorders; WAGR and Chanarin-Dorfman syndromes give clues on obesity and fat metabolism; Schnyder crystalline corneal dystrophy helps elucidate cholesterol metabolism defects that may be implicated in heart attack and stroke; alpha-1-antitrypsin deficiency causes emphysema at an early age, allowing the lung condition to be studied separately from the effects of smoking and other factors in later life; and the study of progeria, a tragic premature aging disease with only a few dozen patients living truncated lives worldwide, sheds light on the normal process of aging.

Research on other rare disorders has already yielded important clinical and pharmaceutical discoveries.  The study of kuru, a rare neurodegenerative disorder found among members of a New Guinea tribe that engaged in ritualistic cannibalism, led Stanley Prusiner to his Nobel Prize-winning identification of prions.  Studies of the rare condition homozygous familiar hypercholesterolemia led to another Nobel Prize-winning discovery and the development of the important statin family of drugs.  A few hundred people suffer from the adenosine deaminase deficiency form of severe combined immunodeficiency disease – a variant of “bubble boy disease” – but the treatment strategy developed for it, of decorating therapeutic enzymes with protective polyethylene glycol (PEG) polymer chains, inaugurated a whole family of PEGylated drugs now used for the effective treatment of many more common diseases.

One unfortunate omission in the Orphan Drug Act was the field of medical devices, which were not given the same incentives as pharmaceuticals.  FDA’s device regulations do provide for what are called “custom devices” – variants of a commercially marketed device that are prescribed for an individual patient, like prosthetics or dental implants.  In the early 1980s, Cook Medical, an Indiana device company that manufactured a bladder stent for ureteral obstructions, custom produced a diminutive version for use in fetuses.  Cook sold this device at cost, as it was an effective way to treat an otherwise fatal condition affecting 200 fetuses each year.  When the number reached 680, FDA decided that the stents were no longer custom devices, but manufactured products, whether sold at a profit or not.  Cook successfully lobbied for new legislation, and the Safe Medical Devices Act of 1990 included provisions for a Humanitarian Device Exemption.  Alas, Cook won the battle but lost the war, because the exemption applies only for conditions affecting fewer than 4,000 Americans per year, explicitly bars manufacturers from making any profit, and provides incentives too paltry to encourage and facilitate the sort of robust R&D projects seen in the orphan drug world.

In addition to the research and product development benefits, orphan diseases present models of health care collaboration and service delivery that, though perhaps not fully scalable to more common diseases, inspire one to think of more efficient and effective approaches, particularly in an era of increasing specialization and of finer diagnostic differentiation among subtypes of medical conditions.  My own first exposure to an orphan disease, more than twenty years ago, came through a chance meeting with Dr. Frederick Kaplan of the University of Pennsylvania, an expert on FOP, a rare genetic bone disease in which muscles, tendons, and ligaments are progressively transformed into bone.  What struck me most – after the tragic oddity of the disease – was the extraordinarily close and productive collaboration between FOP clinicians, basic researchers (including Drosophila geneticists studying homologous gene defects in a boneless creature), and the patient population, all working together with a sense of respect and combined purpose that I had never seen before.  These three distinct populations directly informed and powerfully inspired one another with their respective understanding of the disease, and all of them benefited from the experience.

Because of the level of communication within rare disease communities, and with companies developing diagnostics or therapeutics for diseases where such candidates exist – there was tremendous efficiency and economy in the sharing and evaluation of knowledge.  And if, in the end, a treatment was developed, the companies’ ability to market products directly to a well-defined physician and patient population enabled everyone to benefit, eliminating the massive waste of buckshot marketing.

Perhaps nowhere are some of the most critical issues in health care and its costs thrown into harsher relief than with orphan diseases.  One might justifiably say that our approach to rare diseases is a bellwether of how our society will meet health challenges and deal with vulnerable populations generally.  A utilitarian or egalitarian approach recommends policies that yield the greatest good to the greatest number, not the disproportionate allocation of more money to patients whose conditions are rare or severe.  At some point benevolence towards heart-rendingly tragic cases may compromise the well-being of many.  On the other hand, a belief in equal rights suggests that we should, to the extent possible, help all people to become whole, even the blameless victims of random genetic mutations, and provide medical care adequate and appropriate to their conditions whether they are commonplace or not.

In a time of health care reform, we all are conscious that medical care is expensive, that we need to control costs, reduce errors and inefficiencies, and foster a system based on evidence rather than on marketing.  But “expensive” has meaning only in the context of what we are trying to do.  Inevitably we will develop better methods of screening for potential problems, targeting drugs at those who respond best to them, customizing therapies, and monitoring responses.  This costs.  But if greater up-front costs in approaches to smaller and smaller, more orphan-like populations lead to longer term savings or improved patient outcomes, the equation shifts.  What are we trying to do?  How important is health?  And what is our moral responsibility as a society, as humans, to care for the orphans or for others with more common serious ailments and infirmities who are also, ultimately, alone and distressed in their suffering?

For further information on orphan diseases and drugs, see:

• Thomas Maeder “A Few Hundred People Turned to Bone,” The Atlantic Monthly

• FDA’s Office of Orphan Product Development

• Humanitarian Device Exemptions

• The NIH Office of Rare Diseases Research

• The National Organization for Rare Disorders

Related posts:

1. March 2010 Man of the Month: Brian Rosenfeld, MD
2. Comparative Effectiveness: Dance time for rare and genetic diseases
3. November Man of the Month – Patrick F. Terry

Kelley Connors

This post was written by Kelley Connors, President, Founder, Real Women on Health!

We’re a culture that mixes sexy and boobs.  So, can a woman feel sexy without breasts?

For breast cancer, and other, survivors, the question sounds just as practical as  provoking.  Breast cancer is the most common kind of cancer affecting women, except non-melanoma skin cancer. It’s commonness increases with age and with more targeted treatments available today, women are living longer with cancer.

But the effects of treatment remain.  In some cases, women choose to have their breast removed as prevention… while others have no choice and must have surgery and chemotherapy. Regardless of the path a woman chooses,  cancer wreaks havoc on her “sensual self.” From the toxic effects of chemotherapy on hair and skin to the disfigurement of breast removal, how do women regain a sense of sensuality?

And, what about sex?  Does sex have a place in living with cancer? Sensuality and sexuality and what happens after cancer are vital questions for women coping with cancer today.

Because the loss of sexual desire after cancer has more than one reason behind it, restoring libido or “desire” often requires more than one solution. It’s not at all just about boobs for many women.  And, sometimes the desire for sex remains strong, however, the physiological effects of cancer treatment itself interferes with performance or pleasure.

The topic is one plagued by the medicalization of women’s health, the lack of communication between the healthcare professional and patient, societal taboos around sex and women’s bodies, poor communication between intimate partners and lack of understanding of the impact of cancer treatment. In fact, in the beginning, women may feel guilty that they are thinking about anything other than “surviving” so the question of  “What’s going to happen to my sex life” is left outside of any medical setting.

Since women don’t talk about it with healthcare professionals, Real Women on Health! will open up the dialogue with Lisa Martinez, former Executive Director of the Women’s Sexual Health Foundation, on Wednesday evening 8 pm EST on local radio WSTC 1350/WNLK 1400 or live streaming on the web at www.wstcwnlk.com.

Lisa Martinez is a consultant and educator on women’s health issues and was the Founder of The Women’s Sexual Health Foundation. As a registered nurse and an attorney, she is a leader in the area of women’s health.  She has appeared on CBS News LA and ABC, and has been interviewed on various NPR programs. She has served as a source for multiple media concerns including CBS, The Wall Street Journal, Self, More Magazine, and Discovery Health.

Related posts:

1. Taking A Stand Against the U.S. Preventive Services Task Force’s “New Breast Cancer Guidelines”
2. What the new cervical cancer screening guidelines mean for women
3. “News (Hot) Flash: Sex, Drugs and Menopause” Recap – 2010 Breakfast Series

www.youtube.com/watch?v=9dNQ6HVbvk8

To learn more about the disease and get information about the JDRF Capitol Chapter’s 2010 Walk to Cure Diabetes, visit www.jdrfcapitol.org. The Walks will be held in Washington, D.C. on Sunday, May 2 and in Leesburg, Virginia on Sunday, June 6.

By Tamera Adams. “Can I do anything?” is the response 12-year-old Sara Jacob typically hears when she explains to new friends that she has diabetes and the device strapped to her waist is not a cell phone, but her “life support.” Those are the exact words Sara uses to describe the pump that automatically infuses insulin into her small body. It’s more critical than chemotherapy is to a cancer patient she explains.

Unlike a type 2 diabetic whose body doesn’t produce sufficient insulin, Sara’s body produces no insulin at all. She has type 1 diabetes, which is commonly referred to as juvenile diabetes and generally diagnosed in children, teens or young adults. It’s the most severe form of the disease, lasts a lifetime and its cause remains unknown. Most importantly, the complications that result from type 1 diabetes can be devastating.

Diagnosed at the age of four, Sara has no difficulty explaining what the disease is or how it has affected her life—neither does 12-year-old Jeremy Gross, also diagnosed at age four. Jeremy’s nine-year-old brother Benjamin, on the other hand, was diagnosed just two years ago and seems a little less vocal about his experience.

The stories they shared are common among children with diabetes—the difficulty of going on sleepovers at friends’ houses; teachers that make it difficult for them to leave the classroom to test blood sugar levels or take glucose tablets; and being instructed by gym teachers and coaches to remove medic alert jewelry to participate in sporting activities. Jeremy was especially grateful that he doesn’t have to contend with the latter of these challenges. Fortunately, his gym teacher is very understanding.

However, Benjamin once heard a teacher tell his class that exercise would prevent diabetes—a blanket statement about the disease that doesn’t apply to type 1 diabetics and made Benjamin slightly uncomfortable.

Although their parents are very involved and intervene without hesitation, diabetes is a difficult disease to manage, especially for a child.

That’s why the Gross family turned to the Juvenile Diabetes Research Foundation (JDRF) after Jeremy was diagnosed. JDRF immediately sent a Bag of Hope—which includes a glucose meter, books, DVDs and a myriad of materials to educate and lend support to diabetic children and their caregivers.

Becoming involved with JDRF was an easy choice for the Jacob family too. They wanted to dedicate their time and attention to an organization in search of a cure, and JDRF is the leading charitable funder and advocate of type I diabetes research.

As a JDRF youth ambassador, their daughter Sara has become an outspoken voice for the organization’s efforts to find a cure, not only in public service announcements and at events such as the Children’s Congress where she handed President Barak Obama her “Promise to Remember Me” pin, but at her new middle school too.

When asked “can I do anything,” Sara tells anyone who’ll listen about the JDRF Walk to Cure Diabetes. Excited about helping, they often want to know “Can we walk? When is it? What do we do?”

“I tell them you raise money. I explain about JDRF and let them know every $1 counts. And maybe that $1 [that they raise] will be the $1 that funds the cure,” Sara says.

Both the Jacob and Gross families began participating in the Capitol Chapter Walk the first year their children were diagnosed. Over the years, their Walk Teams, respectively named Sara’s Soldiers and 2 B.A.D. (Two Brothers Against Diabetes), have garnered a tremendous amount of charitable support.

For the past three years, Sara’s Soldiers has been the number one Walk Team, averaging $30,000 in donations. Last year, they rallied 119 walkers. This year, the Jacob family has gone viral, creating their own YouTube video.

The Gross family has also made significant strides over the years. Thanks to Jeremy and Benjamin’s Dad, Geico has been a Gold corporate sponsor for three years in a row. He initially approached his employer for a small donation and later asked for a larger one, which Geico granted in the form of a $10,000 sponsorship.

Every year their efforts along with 1.5 million others around the country bring victims of type 1 diabetes closer to a cure.

Before leaving, Jeremy reassured me that diabetes hasn’t hindered his social life one bit; he has a girlfriend. But that’s off the record and just between us.

Related posts:

1. National Hispanic Medical Association (NHMA) Part of Obama’s Let’s Move initiative to battle childhood obesity
2. Ovarian Cancer: Actress Kathy Bates Shares Her Story
3. Interview with Lisa Salberg, Founder and CEO, Hypertrophic Cardiomyopathy Association

But do we?

As the daughter of Greek immigrants, I always considered myself a thoroughbred. I never questioned my own cultural background, but as far back as I can remember, I was curious about Jews and Judaism. The reality was that I knew nothing about the culture or the religion except that Pikesville, the Jewish neighborhood in Baltimore, was the only area that had a bagel store. I was 24 the first time I entered a synagogue. I felt at home, but it wasn’t about the religious aspects of the service–it was all in Hebrew and I didn’t understand a word. I simply felt a connection to the environment. In 1988, I converted. While the timing centered around our wedding, the decision to take this step seemed completely natural.

It wasn’t until I had personal genetic testing that the pieces of the puzzle fell into place. Mitochondrial DNA from my cheek swab and a saliva sample (I had 2 confirmatory tests because I am compulsive) showed I am in Haplogroup K – a group once found at high frequency in the Basques of northern Spain between 4,000 and 5,000 years ago. My specific haplogroup subtype is K1a5: Seventy percent of the people with my mitochondrial DNA are Ashkenazic Jews. Relatives who have done some additional genealogy research discovered that my maternal grandmother’s family, named “Leventis,” were previously named “Levin.” Six hundred years ago, the family was most likely from Spain but migrated to Greece during after the Inquisition in 1492. They assimilated….became Hellenicized…and the rest is accurately captured in “My Big Fat Greek Wedding.”

I finally understand the quirkiness in how I was raised….why my mother only emphasized a belief in God (vs the Holy Trinity) and never served a pork loin. I feel “related” to my husband, his family and a people that I have been emotionally been connected to throughout my life. Do I feel any less Greek? Of course not. But, I do have a new sense of wholeness because “they” are me.

As many of us celebrate Passover and/or Easter this week, remember that “they” could be you. Whether you explore your roots through stories, historical research or genetics, the knowledge you gain helps you deepen your understanding of yourself. Too often, we don’t question who we are. We don’t challenge or debate the status quo. But, if you take the time–and have the courage–to analyze, interpret, and making meaning of the origin of your values, beliefs, and traditions, you will have the opportunity to actively choose who you are. And, if you give yourself the freedom to embrace those beliefs that “fit” and distance yourself from those that don’t, you can honor your past while being true to yourself. Happy Holidays.

Create Health,
Archelle

Related posts:

1. Wisdom or Innocence? Life Through The Eyes A Seven Year Old
2. Drug Adherence: A Straightforward Personal Commitment Based On Choice
3. Expanding Choice Through Change

So many women responded to Lindsay’s story, that three years ago she started Bright Pink, a new, fun, breast cancer education, awareness and support group that has grown to 10 chapters nationwide.

Instead of hosting sad support group meetings in dank church basements, bright pink girls take yoga classes or belly dance together. Bright pink sends out monthly text messages reminding women to feel themselves up. Next month, they’re hostessing a burlesque show demonstrating self-exams.

“For so long people have been talking about this in the same kind of mundane way and it’s not making a difference. You have to come in there and shake things up a little bit — and that’s what we’re trying to do,” Lindsay says.

Q: You had a double mastectomy when you were 23?
A: I did.

Q: Why?
A: I have a very strong history of both breast and ovarian cancer. My mom’s mother and grandmother died six days apart, both from breast cancer — they were 39 and 58. And my mom was only 18 when it happened.

In addition, there were 11 other relatives — aunts, and cousins on my mom’s side of the family that have passed away from these diseases.

I remember being a little girl and my mom saying one day I might have to deal with this. It was always present. It was never something that got brushed off and we said, ‘Oh, we’ll just deal with it tomorrow.” My mom was very adamant. She went to the doctor consistently every six months. When they said, ‘Come back in a year.’ She said, ‘I’ll see you in six months.’
Because of that, she really detected her own breast cancer. She had a completely clean mammogram. But she noticed a swelling on the side of her right breast. And she said, ‘I’m not leaving until I find out what this is.’ The doctor said, ‘You’re crazy. We just did a mammogram, you’re absolutely fine.’ She said, ‘You need to check it out.’

Sure enough, they went in and did a biopsy and they hit something and it was Stage 1 breast cancer.
And 10 months later she was diagnosed with ovarian cancer.

Q: Oh no!
A: She went through a lot at 41. I was 12 at the time. I grew up very fast. I switched from being a middle-schooler to Miss Mom helping care for my little brother. It was just really, really draining and hard and not an easy kind of thing. You know what I mean?

I graduated from Michigan in 2005 and decided to undergo genetic testing.

I went into it thinking, ‘Maybe I don’t need to be so focused on my breast cancer risk. On my fathers’ side of the family there’s no cancer.’ It was a 50-50 chance.

Unfortunately, I tested positive for the breast cancer gene — BRAC-1 in July 2005.

I made the decision in August 2006 — I was one of the youngest patients nationwide ever to have the preventative surgery. Do I want to do surveillance? Do I want to do surgery? What’s this going to mean? I’m single now.

It was very, very hard. I felt very alone through all of it. I wasn’t a cancer survivor, but yet I wasn’t like everybody else.

Before the surgery, I longed to speak to somebody who was young, and “normal”, and fun and had gone through it and came out on the other side and happy and okay, and actually did love her body and felt okay, and met Mr. Right.

I felt very alone. So I said, ‘I need to make this different for so many other people.’ I originally told my story about my surgery to the Chicago Tribune and the next day I was on the Today show.
It’s a shocking story. Here’s a woman whose healthy, who makes a decision when she’s young to remove her healthy breast tissue. More than 1,000 young women in their 20s and 30s reached out to the writers and producers. Time and time again, the story wasn’t necessarily I had genetic testing, it was, ‘My mom had breast cancer or my grandma had ovarian cancer.’

That’s really where the idea for Bright Pink came from. To know this information, is an opportunity generations of women never had. To be able to identify your risk, develop a strategy to be proactive, and live the rest of your life and be happy and live cancer free.

Q: What are you doing new with Bright Pink right now?
A: One of our favorite new initiatives is the underwire alert.

Q: So it’s a text message reminding you to do a breast exam?
A: It is. All they have to do is text the work PINK to the short code 59227 and they’re automatically enrolled to send them a fun, and cheeky message to just be aware of their breasts. To touch them, and look at them, and feel them and speak up if something changes. We’re trying to get thousands and thousands of women. This is one great, easy activity that all women can do.

Q: So are those shower hangy reminder things just not doing the job?
A: Here’s the problem, when you look at it every single day, it loses its meaning.

Q: And I don’t really like it in my shower. I took it down.
A: It’s true. And cancer societies are moving away from rigid once a month exams. You do this. You rub here. And you go in three circles. We do think the idea of once a month is really critical. It’s not enough to drive you crazy, and it’s consistent enough to notice any changes. We talk about how breast cancer can present itself, we talk about cancer fighting foods you can eat. Is that going to prevent you from getting breast cancer? I’m not God, I can ‘t control that. But there are things you can do to reduce your risk, and that’s something we really believe in.

Q: So what do the messages say? You say they’re cheeky.
A: If you look at the web site it says mind your melons, touch your tatas, treasure your chest. Whether you’re rocking 32A’s or DD’s, we want you to go to second base on yourself once a month…

Q: So how is it working out?
A: It’s great. We have a lot of people that love the idea of it. But we’re trying to get the idea aspect to get into getting people to actually signing up. We try to go into crowded places — every time we have a mic, we take a second and ask everyone to pull out their cell phones and text the code. The feedback we’re getting is, ‘Wow it actually makes a difference now I’m actually aware of my breasts.’

Here’s a sample text:
“Your boyfriend’s not the only one who should be touching your breasts. You know your body best. Go ahead, look for changes and feel yourself up.”

Isn’t this fun?

For so long people have been talking about this in the same kind of mundane way and it’s not making a difference. You have to come in there and shake things up a little bit — and that’s what we’re trying to do.

Q: What else are you doing to shake things up?

A: We run these breast ovarian health 101 educational sessions. They’ve run in Chicago, we’re rolling them out nationally now. It’s a 40 minute session with an ob/gyn or a genetic counselor — we’ve gone everywhere from churches and schools to next Wednesday we’re going to a Hispanic Community Center. We say everything you need to know about your breasts, and then we have a pink cupcake and champagne reception.

And all of our chapters have once-a-month outreach programs.

It’s not your typical support group. When you think of a support group most people think of sitting around a table and everyone’s crying and it’s just so depressing. At Bright Pink, it’s all about doing something active. A lot of our girls have gone through really hard experiences — from losing a mother to a sister to cancer. To dealing with what it’s like to have a scare — finding something and waiting for the results. Their lives have been deeply touched by this disease. And yet there’s unbelievable hope and determination.

So they’ll do a yoga class or a belly dancing session. Our New York girls went hula-hooping. Our Atlanta girls did a Mexican fiesta night.

And they’ll have an organized discussion around a topic related to being young and high-risk. Anything from, If you’ve had a mastectomy, what happens when your shirt comes off with a guy you’ve just started dating? At what point is it right to bring this up? What can you expect in your first genetic counseling appointment? Or, how do you get your family to talk about whose had cancer when they just don’t want to talk about it.

Q: So you’ve taken support groups to fun activities that people actually want to do — but they can still share while they’re there.

A: FUN activities that people want to go to. If I was in a support group the idea of going would be, like, drudgery.

They’re all there supporting each other. And it’s a very kind environment. I know sometimes when you have a lot of women together, it can get a little clicky or a little kooky. Our girls have this deep positive energy that binds them.

Q: Tell me what you’re doing with LuxGoddess.com.
A: LuxGoddess has been a really incredible partnership. The founder and CEO, Scott Kluth, made a very generous donation to us.
There’s so much overlap between the target audiences. The same girls that are coming to our education sessions, are the same women he’s targeting that are looking for a pair of Seven jeans. Or a cute top they’re waiting to go on sale.

Q: So what are you guys doing together?
A: It’s a cause-marking partnership. They sponsor a lot of our events. And our educational information is on their website. And also, a percentage of sales goes to Bright Pink.

It’s a win, win, win all the way around.

There’s so many similarities between the LuxGoddess shopper and the Bright Pink girl.

Q: So what’s next for you?
A: We’re expanding our ambassador network. Chapters around the country are about to launch in Boston, San Francisco and San Antonio.

Our whole focus this year is underserved communities — like African American lesbian women.

A lot of people don’t realize that lesbian women are more likely to die of breast cancer.

Q: Why?
A: They’re not more likely to develop. But based on good health care and good access to health care and insurance

Q: Lesbian women have less access to health insurance?
A: They’re less likely to have good insurance.

Q: Lesbian women?
A: Lesbian women. They’re less likely to go to their doctor’s office and feel comfortable talking to their doctor about their issues.

Q: Why?
A: Think about the questions they ask at your ob/gyn. Like, How many partners have you had? Just the sexual questions can sometimes be quite daunting for them.

Q: Why would it be any different? I don’t think my gynocologist cares who I sleep with.
A: I think there’s just a lot of stereotypes that still exist. This is just what the statistics are.

Q: What else is new?
A: In a couple weeks were doing an educational burlesque show. That’s off-the-wall — talk about wild.

Q: What is it going to be?
A: Have you ever been to a burlesque show?

Q: No. I’ve seen Gypsy.
A: They do songs and skits, their shirts come off. They’re going to be integrating health facts. They may do a demonstration on how to do a breast exam. It’s a great way to reach that community. Last year we did one and had 220 women which was phenomenal.

Everyone has been having that old man with gray hair get up and talk. And he’s not getting through to this demographic.
We need a new way to have the conversation.

Q: And you’re doing it.

To find out more about how to become a Bright Pink Girl check out www.bebrightpink.org.

To get an underwire alert started sign up at this link: http://www.bebrightpink.org/programs/support-community/breast-self-exam-text-reminder/.

Related posts:

1. A Taboo Explored: Cancer, Sex, and Intimacy
2. Disruptive Woman Barbara Glickstein is Recognized by the Women’s Media Center
3. Taking A Stand Against the U.S. Preventive Services Task Force’s “New Breast Cancer Guidelines”

Combined with other AARA provisions, this is good news for some of our nation’s “safety net” providers, including FQHCs, as well as public and nonprofit hospitals that treat many low income patients.  But there’s also a growing hole in the safety net as free medical clinics struggle to survive the current economic recession.

In a recently released research brief on safety net providers by the Robert Wood Johnson Foundation’s Center for Studying Health System Change^[1], the authors note, “while many FQHCs have benefitted from both the recent ARRA funding and federal expansion grants over the past 10 years, many free clinics without FQHC status were facing more serious financial strains than safety net hospitals and FQHCs.”  The report goes on to quote one FQHC executive as saying, “FQHCs got money, and free clinics are worried about keeping their doors open…There’s a big have and have-nots disparity.”

FQHCs include community health centers, public housing centers and some outpatient programs.  These providers receive federal payments for qualified services and are eligible for stimulus funds and federal expansion grants.  In contrast, free clinics do not receive federal payments and they are not eligible for funding available to FQHCs.  Instead, they depend primarily on private philanthropy and a team of volunteer physicians to provide care to the uninsured.

Having served recently on the board of a free medical clinic, I can attest to their value in local communities.  In addition to serving as a major provider of primary care services for the uninsured, our free clinic had an expansive network of volunteer specialty physicians who provided free services not available through the FQHC located just blocks away from the clinic.  In fact, the FQHC would refer their patients to the free clinic in order that they might receive needed specialty services.

Certainly, I’m not suggesting that free clinics receive federal funding for medical services provided by volunteer physicians.  But the attendant administrative and resource costs of providing primary and specialty care services can be significant and funding from existing sources is languishing.  It is time to recognize the unique role of all safety net providers of care, including free clinics, and develop new measures for federal support.  Each has a valuable role to play in our health care safety net for the uninsured.

Related posts:

1. Nurses, Lawsuits and Patient Safety
2. Nurse Practitioners Poised to Take the Lead in Primary Health Care
3. The NHMA Forum on Health Care Reform offers an opportunity to impact health reform legislation

The following guest post by Dr. Peggy Polaneczky, a New York-based physician, was recently featured on the Better Health blog.The original post can be found on Dr. Polaneczky’s The Blog that Ate Manhattan: Food, Considerations & Second Opinions blog.

First off, I need to address those who think they’re being brilliantly funny comparing Apple’s new product name to a feminine hygiene product – making comments like “Does it come with wings?” and “It’s light and easy to use, but can you swim with it?” (these are the cleaner comments I’ve seen), or calling for the next generation ITampon.

Since when did the word “Pad” become unusable in public discourse? And where were these folks when IBM came out with their Think Pad? It’s stupid, 12-year old funny and just plain dumb. Grow up, ladies and gents.

Now, on to more serious matters.

Is the IPad, as some are suggesting, the next big thing in Medicine? Dana Blakenhorn at ZDNet thinks so, calling medicine the IPad’s “Sweet Spot”-

It’s what your doctor has been dreaming of ever ince the PC revolution began. Imagine this in a flip-up case, in every examination room at your clinic. The nurse sets up the chart, the doctor walks in with a stylus and examines you, and when he’s done the chart goes into the file and the prescription is waiting at the desk for you, printed clearly, along with your Coordination of Care Record. Hand the nurse your credit card and you’re off.

• Dr Anonymous gives his thoughts on the Ipad – It’s the software, stupid.
• John Halemka weighs in with some thoughtful questions about the Ipad’s suitability for patient care, but concludes it is “definitely worth a pilot”.
• MobiHealth News takes the pulse of the Healthcare industry on the Ipad – Bottom line – not just yet.
• IMedicalApps shows one place in healthcare where the Ipad shines – Anatomy Imaging
• Brandon Glenn at Medcity does a great job summarizing the Ipad’s limitations
• Chris Paton at the Health Informatics Forum likes the Ipad for docs – the comments from software developers are well worth a read if you want to see what the future for the Ipad may hold
• Joseph Kim at Kevin, MD has 10 ways to use the IPad in your practice (none of which includes an EMR)
• Steve Woodruff , writing at Kevin Md, thinks the IPad will be a game changer in Healthcare. The operative word, in my opinion, is “will”.
• Mike Kirkwood thinks a few EMR vendors, most notable EPIC (the one I use) are poised to enter the Iphone/IPad world. Now that would be very nice….

Related posts:

1. A healthcare and medication organizer that could help medication adherence
2. Ten Good Things About The U.S. Healthcare System
3. Don Berwick — Ready Or Not, Here He Comes

Back in the day when I was a newspaper reporter I completed a biomedical ethics fellowship at the University of Virginia Medical Center in Charlottesville, VA. In addition to sitting in on the hospital’s bioethics committee discussions, I spent much of the week shadowing a nurse in the ICU.

They called her the Death Nurse because her job was to intervene with doctors, nurses, patients and families when the time came for a patient to move from the ICU to hospice. While her title was Supportive Care, she flat out told her me her job was to help people die; not actively, but from behind the scenes by helping patients and those caring for them understand when the time had come to move from curative care to supportive care (email me if you’d like a copy of the article I wrote about her).

When I asked why her job was necessary, she told me it was because it was so hard for doctors, nurses, patients and even families to face the reality of death. Her thoughts were echoed by a doctor there who was completing a critical care fellowship: “A lot of us don’t know what to say because we’re so uncomfortable with death,” he told me. “When someone who is not part of the team says this is ridiculous, it’s time to stop, we listen.”

I bring this up because I completed that fellowship 13 years ago. One would hope that things had changed since then, that more openness and discussions about end-of-life care would have moved us towards a recognition that sometimes death is not a failure, but a success. Unfortunately, however, that doesn’t appear to be the case. Last week, a study published in the online edition of the journal Cancer on the results of a national survey of physicians caring for cancer patients found that most doctors aid they would “not discuss end-of-life options with terminally ill patients who are feeling well, and instead would wait for symptoms or until there are no more treatments to offer.”

Why? Why not talk to your patients about how they want to die, just as you talk to them about how they want to live, how they want to address their disease? Why not talk to them about how you will manage their pain and keep them comfortable as death approaches? How you hope this will give them and their families time to  reach closure in their personal and financial relationships. Give them time to come to terms with this next stage of their life.

These are not easy discussions to have. They take time and, for many doctors, additional training. Earlier versions of the healthcare reform bills now pending would have provided reimbursement under Medicare for doctors who had such discussions with their patients; but, of course, cries of “death panels” doomed that component.

So, I ask you, what is the answer? How do we learn to talk about death with one another, to stop fearing it, to understand that there is no way of avoiding it, and to accept that a death we have some control over will generally be a much better death than one that sneaks up on us?

Let me hear your comments.

Related posts:

1. A Taboo Explored: Cancer, Sex, and Intimacy
2. Violent Death: Preventing Chronic Disease Isn’t Enough
3. Going Beyond Meaningful Use to Meet the Needs of Patients

The following guest post on the subject of cervical cancer screening guidelines is written by Susan Wysocki, WHNP-BC, FAANP, president and CEO of the National Association of Nurse Practitioners in Women’s Health and Susan Scanlan, chair of the National Council of Women’s Organizations. The article below initially appeared on America Media Forum’s website.

It’s not surprising that women are confused about the recently changed recommendations for cancer screening and prevention. New guidelines from the American College of Obstetricians and Gynecologists (ACOG) – the leading medical group that provides health care for women – say women should wait longer to begin cervical-cancer screening and that they should be screened less frequently. On the heels of similar changes to breast-cancer screening guidelines, it’s understandable that many women might see this as a step backward.

On the contrary, the new cervical-cancer screening recommendations reflect advances in our understanding of this disease and in tools now available to prevent it. More importantly, they present an opportunity to educate women about the significant opportunity we have to further prevent – if not eliminate – cervical cancer.

New ACOG screening guidelines recommend women should begin getting Pap tests at age 21 (as opposed to within three years of becoming sexually active) and that, from ages 21 to 29, most women should have Pap tests every two years instead of annually. Additionally, screening for women 30 and older with a history of normal Pap test results now moves to every three years.

To understand the rationale for these changes, it’s important to first know how the disease develops. Cervical cancer is caused by “high-risk” types of the human papillomavirus (HPV), a common sexually transmitted infection. Most women will have HPV at some point in their lives, but their immune systems will typically clear the virus without symptoms or treatment. HPV infections that persist over time – typically many years – can cause cell changes that can potentially lead to cervical cancer. Because cervical cancer is slow-growing, it generally allows ample time for screening to detect problems that can be treated before the cancer can develop. The majority who die of cervical cancer in the U.S. have either never been screened or have not been screened in many years.

A Pap test is the traditional means of screening for cervical cancer. It involves examining cervical cells under a microscope to detect abnormalities that can then be treated, if necessary. Since its use became widespread 60 years ago, the Pap test has helped to significantly reduce cervical cancer rates. So, if the Pap test has been such a success, why change the guidelines? First, newer research shows that cervical cancer is extremely rare in women under 21. Cervical abnormalities among sexually active girls in this age group are common, but they typically go away on their own. Newer studies, however, show that treatment for these abnormalities that would most likely resolve themselves can cause later pregnancy complications, such as premature birth. This is one instance in which treatment can cause more harm than good. By delaying the start of screening, we can hopefully avoid unnecessary treatment.

The rationale for less-frequent screening is similar. Evidence shows that screening with a Pap test every year does not offer any additional benefit over screening every two or three years. Waiting longer between screenings can help avoid unnecessary treatment of abnormalities that likely will go away on their own.

Also, new technological advances offer women 30 and older – the group most at risk for cervical cancer – more protection against this disease. For these women, an HPV test is now available and uses molecular technology to determine whether HPV is present. An HPV infection that continues for years is what leads to increased risk of developing cervical cancer. If an HPV infection is found, a woman can be monitored more closely by her clinician. A negative HPV test in tandem with a normal Pap test can give a clinician and her patient increased reassurance that the woman is not at risk of developing cervical cancer for at least the next three years. The HPV test also is used for women of all ages to help clarify inconclusive Pap test results. The HPV test is not used routinely in women under 30 because HPV is so common in this age group that a positive HPV test could lead to unnecessary treatment.

While screening is critical to preventing cervical cancer, two HPV vaccines – the first-ever vaccines to fight a cancer – are now FDA-approved and offer significant potential to help reduce cervical cancer rates.

Remember, these new screening recommendations are simply guidelines and that clinicians, in conjunction with patients, need to determine the most appropriate cervical-cancer prevention approach for each woman. These new guidelines provide an opportunity for more conversation on this issue between women and their health-care providers. After all, few things are better for women’s health than educated and empowered patients.

Related posts:

1. Taking A Stand Against the U.S. Preventive Services Task Force’s “New Breast Cancer Guidelines”
2. Cervial Cancer: Lifting the Burden
3. Breast Cancer Screening: Where The Rubber Meets The Road

Rachel’s areas of focus include maternal, newborn and child health and reproductive health. She has authored research briefs on private sector involvement in health systems, commercial sexual exploitation, the integration of maternal, newborn and child health and family planning, in addition to a variety of other publications from the GHC.

Women’s economic autonomy and employment opportunities are crucial to their health, particularly their reproductive health. Each year, 536,000 women die, nearly 10 million are disabled, and 250 million years of reproductive life are lost because of poor reproductive health. Enabling women’s economic sovereignty has the potential to allow women to take control of their fertility – they would have the resources to access family planning services, effectively space wanted pregnancies and limit unsafe abortions – all of which are leading factors to poor maternal health.

Limited economic security, limited access to education and poor employment opportunities contribute to lack of access to health services, education and employment, and lead to high fertility rates and increased maternal mortality and morbidity. In many countries, women are not allowed to own property and are limited in their economic opportunities, restricting their economic security and limiting access to reproductive health services. Lack of finances is particularly problematic for women who are heads of households or married women who have little say in family finances.

Limited financial autonomy for women also has a profound impact on their children, resulting in generations of young people who have limited opportunities for education and employment. Young girls are particularly vulnerable, as they often miss out on educational or employment opportunities because they have to provide care for sick relatives or have children at a young age. Economic empowerment could break this circle of poverty and ensure economic security and improved health for generations to come.

In addition to affecting women, families and future generations, poor reproductive health has an impact on the broader community and nation. Rapid population growth because lack of contraception exacerbates poverty, as scare resources must be distributed among more people, resulting in small investments per person and exacerbated financial hardship. Poor reproductive health also stalls economies, exacerbates food shortages, and contributes to national security issues.

The economic security of women has an important impact on their reproductive health. Opportunities for economic empowerment, such as VirtuArte, are absolutely essential to ensuring that women have access to reproductive health services, including family planning, birth spacing and safe abortions. Without good reproductive health, women, families, communities, and nations in developing countries will continue to face poverty, economic insecurity and poor health.

Related posts:

1. The Value of Health: Creating Economic Security in the Developing World: Disruptive Women in Health Care is Going Global with a New Series and e-Book on Global Health
2. Health and Economic Security in the US: Why Community Health Centers Matter
3. The Value of Health: Creating Economic Security in the Developing World

The following guest post by Peg Willingham, Senior Director for External Affairs for Aeras Global TB Vaccine Foundation, is part of Disruptive Women’s “The Value of Health: Creating Economic Security in the Developing World” series.

The development of new TB vaccines is a vast and expensive undertaking requiring an all-hands-on-deck approach.  Private foundations and a select group of European governments are supporting this work, but the US government lags woefully behind.  The US established itself as a world leader in HIV/AIDS through President’s Emergency Plan for AIDS Relief (PEPFAR) and contributions to the Global Fund to Fight AIDS, TB and Malaria.  The U.S. also is a dominant force behind ramped up HIV and malaria vaccine research.  Yet, the US has failed to take up TB vaccine research as a priority funding area.  Because of PEPFAR, many are now living full lives with HIV, only to be struck down by TB.   Why this lack of action on TB?

The pandemic is ever-more dangerous as it evolves globally and thousands of Americans become ill with TB each year.  TB is a disease of poverty and it kills nearly as many women as all causes of maternal mortality.  Active TB disease hampers a mother’s ability to care for her family and robs many children of their mothers.  Children, especially those living in the crowded conditions of poverty, are also at greater risk of becoming infected with TB when a parent or family member has TB.

The good news is that there is tremendous momentum in TB vaccine research, with seven TB vaccine candidates currently undergoing clinical testing.  My organization, Aeras Global TB Vaccine Foundation, and a handful of others are doing all we can with available resources to accelerate the process to get new, safe and effective vaccines to those who need them so urgently.  Although Aeras is a non-profit research organization, developing new vaccines is still a complex and expensive undertaking.  One large-scale clinical trial designed for potential licensure of a vaccine will cost approximately $160 million.  Yet this represents a smart investment, because a TB vaccine would be save millions of dollars – and lives.  As the Obama administration and Congress outlines their foreign assistance agendas, TB vaccine research should be prioritized. Investment in preventing TB today will translate into fewer resources in treatment and lost productivity – and lives – in the future.

Related posts:

1. Preparing for the Fourth Decade of AIDS
2. Poll: Should the H1N1 vaccine be mandatory?
3. Global Health Starts at Home

The following guest post — part of Disruptive Women’s drug adherence

Patient adherence represents a rare “win-win” in health care, so it’s no surprise that all sectors have been busy seeking potential solutions. Technology companies have developed reminder gadgets, employers have redesigned benefit plans to remove cost barriers to chronic disease medications, pharmaceutical companies have developed combination drugs to simplify regimens, and providers have begun implementing new patient education and counseling techniques. However, efforts to date have remained largely sector specific and silo-ed. An earlier post by Janet Wright correctly pointed out that poor adherence is not the fault of patients, but rather the fault of the entire health care system. Ideally, we need to move beyond silo-ed efforts and develop a system-wide approach to the problem.

Recognizing that, the New England Healthcare Institute (NEHI) launched a multi-stakeholder initiative earlier this year to identify system-wide solutions to poor adherence. Several of these solutions have been mentioned in this series such as improved care coordination and the use of health information technology. However, I would like to highlight a fundamental system-wide change that has not yet been discussed in great detail, and was one of the critical findings from NEHI’s multi-sector expert roundtable and issue brief:  payment reform.

It is important to keep in mind that patient medication adherence is ultimately a quality issue.  As NEHI’s research shows, the link between medication adherence and improved health outcomes is clear.  Studies of chronic disease patients have shown that adherent patients have significantly lower hospitalization rates than nonadherent patients. Unfortunately, the current payment model is not designed to reward providers for patient outcomes – of which medication adherence may qualify as either a means toward that end or an endpoint itself. Either way, using payment reform to move away from rewarding volume of services and towards rewarding good health outcomes would go a long way to improving medication adherence and patient outcomes.

Performance-based reimbursements, global service payments, and Accountable Care Organizations are all being discussed as ways to reform our payment and delivery system. Performance-based reimbursements would reward providers for helping patients achieve measurable, positive health outcomes. Global service payments would give providers a lump sum to manage a group of patients as they see fit – with the expectation that the payment is used to achieve the best possible outcomes. Accountable Care Organizations are collaboratives within which a hospital, primary care physicians, specialists and other providers accept shared responsibility for the cost and quality of the care provided to a group of patients.

With the ultimate goal of better patient outcomes, all three of these models could provide the needed incentives and resources for providers to invest in interventions that would help them monitor and improve adherence.  For example:

• Providers would have incentives to review and act on patient adherence data such as claims or pharmacy records, which could be used to identify non-adherent patients so that providers could intervene as appropriate.

• Physician practices would have additional resources needed to invest in longer visits with patients. Moving beyond the 15 minute model would allow physicians and other providers within the practice to engage in activities such as medication reconciliation, motivational interviewing and patient education.

• Payment reform to promote adherence and improved health outcomes could be extended directly to non-physicians as well.  We have an enormously valuable and untapped resource in our community pharmacists, and yet they are not reimbursed for patient medication counseling beyond limited medication therapy management programs.  Creating the appropriate reimbursement incentives could encourage community pharmacists to provide additional services and to work collaboratively with physician practices around medication reconciliation and adherence.

• Clinical pharmacists could be hired by physicians to assist their practices with medication related needs. Given the skill set that clinical pharmacists have in pharmacology and medication use, they could be utilized on a regular basis to care for patients struggling with complex medication regimens.

• Providers would have incentives to better coordinate patient care, particularly during times of care transitions such as hospitalizations. Under an Accountable Care Organization model, providers would be accountable for ensuring that medication lists are reconciled before patients leave the hospital, that patients understand post-discharge care instructions and that the appropriate follow-up is made to ensure that patients have filled their prescriptions and are educated about taking their medicines appropriately.

Payment reform is an essential first step in taking a system-wide approach to medication adherence. It is critical that we align incentives to focus on and reward better patient outcomes.  Without the appropriate payment incentives, it will be exceedingly difficult, if not impossible, for our health care providers to make any meaningful dent in the widespread problem of poor adherence.

Related posts:

1. A healthcare and medication organizer that could help medication adherence
2. Medication Adherence Requires a Team-based Approach
3. National Consumers League – National Medication Adherence Campaign

The following guest post on the subject of

If the Disruptive Women series on medication adherence has shown anything, it’s that there is a nearly endless number of potential solutions to address the nearly endless number of reasons patients and their prescribed medications do not “stick.”. Over decades of practice in cardiology, I had a first hand view of the challenges patients face in adherence – inability to afford the prescription to incomplete understanding of a med’s value or benefit to overestimating the risk to unclear directions or complex instructions on how and when to take the drugs..

Now, in a staff role at the American College of Cardiology, I join others in the search for solutions to help other cardiologists and health care professionals improve adherence to complicated medication regimens. Successful medication adherence is not a failure on the part of the patient to take their medication, but rather a failure on the part of the health system – including patients, their providers, the reimbursement structure, the insurance companies, etc. – to make it easy and worthwhile for the patient to take his or her medicines..

In July a group of key stakeholders met to brainstorm potential solutions to improve medication adherence. The sponsoring groups represented the major players in improving medication adherence – the drug stores (National Association of Chain Drug Stores), the drugs (PhRMA, GlaxoSmithKline), the patient (National Consumers League) and the ACC representing the physician joined the coalition this fall. In addition to these groups, there were about 40 leaders in the field who shared their wisdom. With the knowledge gained from the discussion in July and in the context of the proposals being considered by Congress, the group is formally recommending five solutions that will improve medication adherence:

Quality Improvement Strategies. Many of the Congressional proposals being considered focus on how to improve quality in the health care system. It is imperative that any national quality improvement effort explicitly acknowledge and address medication adherence as one of its aims.

Care Coordination. Many of the proposals being discussed also include methods to improve care coordination. To improve medication adherence, any care coordination plan must include one often overlooked person – the patient. By having open discussions with our patients about the importance and rationale of each medication prescribed and allowing patients to ask questions and give feedback, we increase the chances of desired outcomes all around. .

Use of Health Information Technology (IT). With the passage of the health IT provisions in the stimulus bill, the number of offices and hospitals using technology is likely to increase. We must demand that health IT have the ability to improve the flow of medication information between patients and their physicians and identify gaps in patients’ medication use. A crucial component of that, as mentioned by Julie Murchinson in her post, will be using technology to engage patients in the management of their medications.

Patient and Provider Education and Engagement. The fourth recommendation addresses physicians helping patients to help themselves. As patients understand their conditions and the benefit of meds in managing those conditions, adherence increases. It’s up to providers to make this happen. If they don’t understand, there’s no hope that 6 months, a year, two years out they’ll still be taking the medications they need to live active and healthy lives.

Health Services Research. More research on medication adherence is needed to understand what we know and what we only think we know. By studying under-researched areas in medication adherence, we can begin to close the research gaps and better understand what methods work best for improving adherence and improving clinical outcomes.

Successful patient medication adherence is not just about the patient taking his or her medication – it’s about the health system working together to allow the conditions to exist to enable the patient to take his or her medication. The time has never been better to implement the solutions explored during this series.

Related posts:

1. National Consumers League – National Medication Adherence Campaign
2. Improving Adherence with the Help of Pharmacies
3. Payment Reform: A System-wide Solution to Medication Adherence

The following guest post on the subject of drug adherence is written by Julie Murchinson, Founder, Health 2.0 Accelerator and Managing Director with Manatt Health Solutions.

The tools are coming! The tools are coming! For a while now, tools to manage drug adherence have been developed, many designed to enable the patient to self-manage in the context of and in collaboration with the health care system from a specifically designed device or heavy application. Patient adoption, however, has been slow and the vision for self-management of drug adherence not yet reality. But recently from the budding Health 2.0 space, we are seeing tools built on more accessible web and mobile platforms that allow patients to manage when and where they want to with their mobile device (e.g. iPhone, Blackberry, cell phone). So, in much the same way many people’s lives have changed as a result of being able to use Facebook or Twitter, or read the Washington Post from their phones on the bus or out at lunch, patients who have previously required proximity to their home device or desktop to log medications taken can now not only track on their phone what they take from their pill box, but also take advantage of glow cap or smart label technologies that can technically interact with a phone-based mobile application.

It was one thing when the Brazilian government was sending text messages to remind women to take their birth control pills (which, by the way, has been highly effective), but we are in a new age of both passive and active patient engagement with mobile platforms. There are iPhone accessible apps like Polka and TheCarrot.com that enable patients to schedule and track their medications taken along with a number of other health topics including sleep, exercise and mood, among others. Medic8Manager provides an iPhone solution that goes a few steps deeper on drug adherence for managing scheduled medications with reminder functionality, refill tracking, missed dose alerts, as-needed meds and discontinued medications. A similar application in development from Informediq even uses the tagline, “enabling healthcare anywhere”. While some products are typically used solely by patients without involvement required from a physician or other caregiver, we are starting to see more user-friendly tools that originate from the physician-patient care process, while allowing for more consumer-friendly adherence tracking, a good example of which we are seeing from the new AdhereTx product. The next step in innovation can be seen from eMedMobile which facilitates a phone working with “smart labels” on prescription medication bottles that store drug data and send alerts to caregivers when a drug is missed.

What mobile drug adherence applications cannot do is change the character of the person using their phone for this purpose.

• Will we choose to tweet about our day, check the latest scores AND log our our Lipitor on our phone?
• Will we enter all of the drugs we take and their respective schedules into one of these applications or will we demand that that information be automatically downloaded from our doctor or pharmacy as part of the electronic prescribing process?
• Will we be more inclined to use these tools if we are doing so in tight coordination with our physician?

A growing number of technology companies are betting on the fact that mobility will enable flexibility and meet the patient where they are, providing enough value to help them change their drug adherence behavior to some extent. We are even seeing some products go the next level to provide incentives to patients like Health Honors, which uses a points-reward system that can be used on health-related awards like fitness equipment, co-payment discounts and other financial benefits. We, the broad “we”, are hopeful if not excited about the prospects for these tools to have a significant impact on adherence once and for all. Although time will tell, innovation in this area is both notable and promising.

Related posts:

1. Got Meds: Drug Adherence for Young People with Chronic Medical Conditions
2. Drug Adherence Throwdown: Analyzing America’s Other Drug Problem
3. Drug Adherence Throwdown: Disruptive Women Take on America’s Other Drug Problem

Poor medication adherence affects all of us in healthcare — it’s a problem that our entire industry is trying to tackle. By many estimates, more than 50% of patients aren’t taking their medications as prescribed. And that’s a real problem: it’s adding $177 billion in additional healthcare costs and contributing to sicker patients. Reports associate lack of adherence with 10% of hospital visits and 40% of nursing home admissions.

At McKesson, we’re trying a new approach. We’ve partnered with pharmaceutical manufacturers to sponsor programs that get community pharmacists involved in promoting medication adherence. Independent and small-chain pharmacies, including McKesson’s chain of Health Mart pharmacies, have a reputation for building strong relationships with their customers and delivering excellent service. By getting pharmacists to spend time counseling patients about their medications, we’re helping patients become more informed, more confident, and more motivated to adhere to their medication regimens.

In one of our first programs, the Pharmacy Intervention Program, we’ve trained hundreds of pharmacies in motivational interviewing and other key health behavior change techniques — asking patients open-ended questions and having a true discussion about the patient’s knowledge, feelings, beliefs, goals and expectations. This patient-centered approach to counseling helps pharmacists be as effective as possible in providing education and support to patients.

Here’s how it works: when patients come to pick up their prescription for one of the sponsored medications, the pharmacy’s computer system alerts the pharmacist or pharmacy technician that the prescription is eligible for counseling. Before the patient leaves the pharmacy, a pharmacist begins a conversation with him or her about the medication and provides the patient with literature to take home. Pharmacists are reimbursed financially for the 5 minute counseling time — something they ordinarily do for free — further encouraging them to take the time to promote patient adherence.

We’re already seeing incredible results from the program. In our pilot program this summer for two products, our pharmacists achieved a 24% increase in adherence (the number of patients returning for refills) for a smoking cessation therapy medication, and an average 38 % increase in adherence rates for a COPD medication. These are mind-blowing results, and the manufacturers with whom we’re working have taken notice. We’re all excited about the impact of this program and the results that community pharmacies may be able to achieve in driving medication adherence.

So many times in our healthcare system, a patient’s different care providers work in isolation to promote better outcomes. But programs like the one we’ve introduced at McKesson suggest that more collaboration and coordination — reinforcing common messages about conditions and medications from the physician to the pharmacy counter — can make a huge difference. We’re also seeing the real difference that strong relationships and quality, patient-centered discussions can have on a patient’s understanding of and loyalty to a therapy. These are things to keep in mind as we ponder how to address this very large issue our healthcare system faces with medication adherence.

Related posts:

1. A healthcare and medication organizer that could help medication adherence
2. Payment Reform: A System-wide Solution to Medication Adherence
3. Improving Medication Adherence with a Cell Phone

I was in West Africa to make a documentary on the impact of new vaccines and pneumonia prevention efforts in developing countries.  After years working at a pharmaceutical company where I was fortunate enough to launch these new vaccines, I realized that something was missing.  I was surprised to learn that the percentage of deaths due to pneumonia was so high (almost 1/5 of all post neonatal deaths).  Ninety-five percent of these deaths occur outside of the US, Europe and other industrialized countries, yet it was in the developed world where we did most of our business.  We often forget about children in the developing world.  We see pictures of desperate, hungry children and rationalize well, if I don’t do this one thing, something else will kill them anyway.  But all you need to do is travel to one of these countries to realize that children are the same all over the world.  You forget that they are still grappling with some of the diseases that have long been out of our minds for children in our country.

Pneumonia? Who would have thought that this is such a large problem for young children?  In fact, it is the illness that leads to the most deaths worldwide – over 2 million young lives lost every year, a child every 15 seconds.   We have access to pneumonia vaccines and antibiotics to treat – child deaths due to pneumonia are relatively rare in US and Europe.  These deaths unfortunately occur all too often in the developing world.

While at the hospital in Ibadan, I spoke with mothers waiting outside the vaccine clinic. Many of them hadn’t heard of pneumonia, although one mother had lost her daughter to the disease, or as she described it to me, a “cold in her bones.” What was so heartbreaking about her story was how easily it could have been prevented. For only $20 USD, her daughter could have been fully immunized against pneumonia with Hib and Pneumococcal vaccines, similar to those given to our children in the US, and while non-vaccine-preventable strains exist, an appropriate course of antibiotic treatment costs less than $1.00.

The mothers I met that day are not the only ones unfamiliar with pneumonia. Many global health leaders and donors are unaware of the magnitude of this disease or the full range of effective tools available to protect children. In an effort to overcome this legacy of neglect, global health advocates around the globe are banding together today to commemorate the first ever World Pneumonia Day. Our shared goal is to bring greater attention to this disease and to motivate policymakers and donors to control child pneumonia through the protection, prevention, and treatment strategies recommended by the Global Action Plan for the Prevention and Control of Pneumonia (GAPP).

We often see images of sick children losing the battle against poverty and disease, but I think one of the reasons I like this photo so much is that it reminds me of the joy a child’s recovery can bring. Pneumonia is a common and deadly disease, but it is stoppable. World Pneumonia Day is an important first step in making the leading killer of children a global health priority.

If you’d like to learn more about child pneumonia or what you can do to support World Pneumonia Day, please visit our website.

Related posts:

1. Can 30 seconds of your time change a child’s life?
2. Saving Money while Saving Lives: The Economic Argument for Childhood Vaccination
3. If he could speak, what would he tell our leaders? Tell them for him.