By Robin Strongin. It wasn’t all that long ago that I discovered a real treasure in Washington DC–the Kreeger Museum.  It is a magnificent, yet intimate museum housing a stunning art collection.  It offers concerts, lectures, community events and so much more. In December, we held the Disruptive Women in Health Care annual reception at the museum – a program that highlighted the power of art and music and its relationship to health and wellness.

I am writing to let everyone know about an upcoming Kreeger event—it is a program to benefit Alzheimer’s patients and their caregivers and families.  We’ll hear about it at the event Tuesday, March 15 at the jewel of a museum, over champagne cocktails and hors d’oeuvres. See below for more details.

Hope to see you there. 

About Conversations at The Kreeger Museum

The Kreeger Museum is proud to announce the launch of an exciting new art and music program for individuals with Alzheimer’s Disease (AD) and other dementia related illnesses and their caregivers. (more…)

Susannah Fox of Pew Internet talks about Healthcare Out Loud, the concept of people using the internet to gather and share information in a very public way. 

Watch video

Susannah presents trends over time as related to internet access in general, for example:

• Not that long ago in 1995, 10% of American adults had access to the internet, as compared to 75% today.
• In the year 2000, 5% of American homes had broadband. Today that number is about 66%. 

She also discusses how mobile and broadband are multipliers to what people do online, and asks the question: “What’s the ROI on love?”

By Hope Ditto. So if you’re like me and – single or taken, happy or miserable — you disdain Valentine’s Day annually with the sort of unbridled hatred most people reserve for only the IRS and Christina Aguilera’s rendition of the National Anthem, take heart! If you, like me, feel a rush of irritation when you spot one of those sappy grocery store displays (groaning under the weight of the overpriced heart-shaped chocolates it is so desperately trying to promote) or are subjected to yet another of the cutesy, romantic commercials that infiltrate our daily lives sometime after the winter holiday decorations — a contrast in all of their stark, primary-colored glory — are relegated to the clearance section, fear not! As someone who, beginning just after MLK Day, feels an innate sense of impending doom perfectly correlated with the slow transition of my world from the full ROYGBIV color spectrum towards such an abundance of pink and purple I could swear someone swapped my Ray-Bans for rose-colored glasses, there is a (small) glimmer of hope this year!

But if you’re like me and also believe that laughter is the best remedy for any ailment (including a case of what my friends have appropriately dubbed the “Valentine’s Day Blues”), I’ve got you covered [well, CBS Cares does but I’m the one writing about it so I’ll take some credit!]. Not only are their Valentine’s-themed PSAs informative, culturally relevant and just racy enough to keep your finger off the fast forward button on your DVR remote, they are downright hilarious – guaranteed to evoke a healthy laugh from even a “Valentine’s Day Grinch” like myself.

The PSAs are part of CBS Cares’ Valentine’s Day Campaign on Testicular Cancer. Along with airing the PSAs – which encourage men to “do something special for [their] woman on Valentine’s Day” by examining themselves for testicular cancer, because “this Valentine’s Day, why give a diamond when you can give the family jewels?” – the campaign (just one of the several currently being promoted by CBS Cares) offers additional information, resources and social media tools designed to both educate the public and get the word out about testicular cancer prevention. Plus, if you’re like me and detest Valentine’s Day, how can you not support any campaign encouraging your man to forgo the traditional V-Day gifts?! (I recognize that I may be alone on this one.)

CBS Cares is a lot bigger than just this “Family Jewels” bit, though. Created by CBS Television Network in 2000, the CBS Cares campaign is a commitment to use CBS talent to create PSAs promoting a variety of issues — from child abuse to menopause, identity theft to epilepsy and everything in between – in need of a platform. Though it began as just a collection of 15 second or so PSAs, CBS Cares has evolved into so much more. As their website explains, “With Network PSAs as its fulcrum, CBS Cares has grown into a multimedia project involving many areas and talents at CBS: Entertainment, News, Sports, Digital Media, Radio, CBS Outdoor, Communications and Marketing.” Some are themed around a holiday and put into circulation for a set period of time (like the Valentine’s Day testicular cancer one or like this Christmas-themed one encouraging women to get regular pap smears), while others are more general and thus relevant for several months or years (like this one on getting a regular colonoscopy or this one on supporting our troops). There are some “core” issues that the network continues to promote, but staff are always on the lookout for new, underserved causes that could be bettered through a CBS Cares campaign. As time has gone on, the network has not only increased the scope of these mini-campaigns but also their monetary commitment. In 2009 alone, the network scheduled more than $200 million worth of public service announcements. While all of the creative work (talent, copy, production, etc.) is done in-house, CBS Cares notes that “The starting point for every PSA–before scripting begins–is close consultation with experts on the frontline of each field to learn what messages they feel are the most important to convey.”

So, whether you are like me or you are a Valentine’s Day enthusiast who has been counting down the days, shopping for the perfect dress, tearing up at the commercials and walking around relishing in what you know for certain is love in the air (don’t worry, I’m not here to judge), the PSAs are worth a view (and definitely worth forwarding along  if you are like me and lucky enough to have someone special in your life, Valentine’s Day enthusiast or [most decidedly] not).

From all of the Disruptive Women in Health Care, Happy Valentine’s Day!

By Santi Bhagat. We all know how hard it is to advocate for ourselves, our spouses and our parents.  But can you imagine having to advocate for your child day in and day out for the rest of your life?  This is the harsh reality faced by many parents of children with childhood-onset health conditions and disabilities.  And believe me, it is hard!  When my perfectly healthy child became critically ill at the age of 8 years, I went from being a medical fellow to a life-long, full-time parent advocate. 

I learned everything I didn’t want to know about the health care system, but I eventually realized that the knowledge I acquired as an advocate is equally critical to health care practitioners if they are to provide quality health care, i.e., the right care the right way at the right time.  Adding the dimension of patient-centered care means care is delivered the way patients need and want it. 

Right now, we are still learning how to advocate for the right care the right way at the right time.  It looks like we’ll have to wait a while to get care the way we need and want it.   

As a parent and a physician, I had to be extra careful in the pediatric health care world.  If I came across as too demanding, I would have been dismissed as a neurotic or helicopter parent.  (I know a couple of physician-parents who were erroneously said to have Munchausen’s Syndrome by proxy.)  If I didn’t advocate, I risked danger.  In every situation, I had to find the fine line between objectivity and subjectivity, to assure myself that I truly was balanced in my approach. 

The problem is that even though most of us know what to advocate for, we are still dealing with human beings in the health care system.  They have pressures and barriers, they have egos, they have feelings – and they have the knowledge.  The art of advocacy is getting health care providers to do the following:

• Provide the best care so the patient achieves and maintains optimal health, and
• Empower patients with the knowledge needed to make informed decisions and self-manage their health and health care. 

The art of advocacy should empower health care providers to practice the art of medicine.

Parent advocates have another equally complex system to tackle: the education system.  After learning about all the various laws, e.g., American with Disabilities Act, Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act, parents have to learn about the culture of their child’s school as well as the county and state educational systems.  Then, parents have to advocate with human beings in the educational system to practice the art of education.

When our children grow up and enter adulthood, all the rules change and we are back at square one again.  The only consistency is that the systems are devoid of supports, and as parents, it is up to us to start over and learn from scratch on how to advocate for young adults with childhood-onset conditions and disabilities.

By Santi Bhagat, MD.  It seems that children with chronic medical conditions and disabilities (CMCD) just disappear into thin air when they grow up.  No-one tracks these young people, so we have no idea what happens to them.  We don’t know if they have insurance and doctors; are sick and in emergency rooms; go to school and have jobs; and/or live independently and have social lives. It is estimated that 600,000 young people with CMCD enter adulthood every year, into a system devoid of any supports and services, a system that is completely unprepared for them.  

To help improve things for children with CMCD as they transition into young adults , Physician-Parent Caregivers (PPC), is launching EMERGE–a new campaign  next week…stay tuned…I will be blogging more about that in the coming weeks.  

In the meantime, I would like to introduce a special PPC young adult leader, Amy Long.  Amy is one of America’s 8.2 million amazing young adults with CMCD who push through barrier after barrier and never give up on their dreams.  Amy gave me permission to share her first person account of what it is like to be a young adult with a chronic medical condition.  She calls it, the Google Circus.

GOOGLE Circus

Five years ago, I aged out of my pediatric skeletal dysplasia clinic (a place for kids with bone diseases).   I will never forget my first two adult medicine experiences….The first happened late one Fall evening. 

I was in college dorm my senior year and I woke up  from a late afternoon nap with a terrible headache, flashes of light and floating dots in my vision. I have a rare connective tissue disorder and form of arthritis called Kniest Syndrome that puts me at risk for a detached retina.  The flashes of light and floaters are common symptoms of retina disease.  Retina detachment is only fixable in the first 24 hours. I immediately called Student Health who told me they could get me into see an eye doctor next week.  I tried to explain that I couldn’t wait that long but no one seemed to take me seriously. All the doctors had left for the day. I called a friend and we drove the Emergency department.

We arrive. I spell Kniest no less than 3 times for the tirage nurses. They lead me back to the eye exam room and leave the door open with my chart hanging there. The doctor grabs my chart, starts to come in, looks at my file. His eyes widen and he backs out of the room. Through the open door I watch him try to Google Kiiest Syndrome.  He flips through the links and then finally after five minutes comes back in and sheepishly asks me, “So what exactly is going on?” I tell him, yeah I have a migraine-like headache, and I am seeing stars. I have a collagen disorder that causes high myopia and thus very fragile retinas. “Yes, yes, how exactly do you spell your condition?” I spell Kniest 2 more times.  I then watch him turn around and type Kniest Syndrome into Google. (more…)

By Sheryl Flynn.  Earlier this week, the American Heart Association (AHA) announced a new partnership with Nintendo of America.  According to their website (www.activeplaynow.com), the AHA and Nintendo are working together to promote physically active play as a part of a healthy lifestyle. This is the first time that the AHA has partnered with the video game industry to help consumers discover how video games that incorporate movement can be beneficial to health.  According to their “Healthy Lifestyle Tips” they encourage everyone in the house to enjoy active-play video games together and when the weather prevents outdoor activities- they encourage hosting an active-play video game tournament in your living room. 

 Today, according to AHA’s press release- They are not supporting playing all video games in an effort to promote a healthy lifestyle- only the Nintendo games such as WiiFit™ Plus and Wii Sports Resort™ software for the Wii are supported by the AHA.  The AHA’s logo will be found on these products beginning this summer. 

 The AHA is “trying to reach people where they are.”  They suggest that if you don’t move at all- move some.  If you move a little, move a little more.  In essence, if you go outside and play sports or are already active- they are not suggesting that you come inside and play video games- rather, they are trying to get those people who play video games (or are otherwise) mostly inactive- to start doing something active.  They figure, if you like playing video games and typically play video games with your thumbs while surfing the couch- perhaps you could get a little exercise by playing active video games. They are targeting the “no physical activity” group and trying to get them to move!

So, as one would expect- there is controversy over the two companies working together.  Some people believe that both Nintendo and the AHA see a significant return on their partnership investment.  But the AHA has suggested that this is not the case.  Nintendo has contributed $1.5million to AHA to fund a prevention platform aimed at informing Americans about heart disease and stroke prevention.  Another important consideration to keep in mind is that Nintendo is not the only “active-play” video game company out there.  Sony PlayStation released the “EyeToy” years before the Wii and it offers many hours of fun, active gaming as well.  The EyeToy is fun because you can see a video projection of yourself in the game, rather than controlling an avatar as with the Wii games. Microsoft plans to release Project Natal later this year- these games will also offer hours of active gaming fun! There are a number of other off-the-shelf gaming devices that promote active gaming- the consumer should be encouraged to seek the game that would be most fun for them. 

Perhaps most exciting, however, is the Innovation Summit that the AHA intends to host.  With $350,000 support from Nintendo, the AHA will bring together “Thought Leaders” in the area of health care, research, physical activity, fitness and video gaming to look at the synergies and potential benefits of active-play video games and physically active lifestyles.  Now that is exciting!  Finally!  The game industry, researchers and health care industry all together in one room to envision the future!  Wow!

By Stephanie Mensh. House and Senate Appropriations health subcommittees are in full swing this month. On May 5, the National Institutes of Health Director testified to the Senate subcommittee.

I follow NIH funding because they have a leadership role in understanding and treating cardiovascular and neurological diseases. For example, NIH sponsored the recently-reported landmark CREST study comparing surgery to stenting for patients with carotid artery disease related to stroke, conducted in 117 centers over 9 years.

NIH also sponsored historic research on the clot-buster tPA treatment that reduces morbidity and mortality in acute stroke patients when initiated within three hours of onset.  Stroke is the third leading cause of death and the leading cause of disability in adults. So, I assumed that a lot of privately-supported research was underway.

I was shocked and dismayed to hear Story Landis, Ph.D, Director of NIH’s National Institute of Neurological Disorders and Stroke (NINDS), tell the American Heart Association’s lobby-day lunch attendees that pharmaceutical and biotech companies are abandoning research into acute stroke and neuroprotective drugs that could extend the window for tPA treatment beyond three hours.

This means that NIH will be left to develop new treatments. Unfortunately, only 1% of the federal NIH budget goes to stroke.  President Obama’s proposed 2011 budget for NIH is $32 billion. I’m advocating for the American Heart Association/American Stroke Association’s recommendation that Congress appropriate $35 billion for NIH, so more grants can be made for stroke research.

My husband, Paul Berger, had a stroke 20 years ago at age 36.  Paul wouldn’t have qualified for tPA even if it was available back then because his stroke was the result of a ruptured aneurysm dumping blood in his brain, instead of a clot (80% of strokes are caused by clots).  I am very  encouraged to see NINDS support research into other treatments for the acute phase as well as post-stroke rehabilitation.

May is National Stroke Awareness Month. You can find information on stroke warning signs and risks posted to the NINDS website: http://stroke.nih.gov/ .

Even with emergency medical treatment, many stroke survivors will require rehabilitation and suffer chronic health problems—weakness or paralysis in arms and legs, difficulty with speech/language, and problems with everyday living skills.

Strokes affect people of all ages, including younger people who may lose their jobs due to stroke-related disabilities. The sudden, life-changing nature of a stroke impacts the survivor’s spouse and family as well.

To help make everyday better, my husband and I have written 3 new E-Books on stroke recovery just launched by Positive Power Publishing and  StrokeSurvivor.com:  (1) “Conquering Aphasia & Stroke TODAY!”; (2) “Conquering Aphasia & Stroke for Caregivers”; and (3) “Articles to Take With You.”  Excerpts and details are posted at: http://www.strokesurvivor.com/e-books.html.

By Lois Privor-Dumm. How many times have you seen a single photograph that has caused you to stop what you’re doing and find out more, tell a friend or donate money?  We read so much about the problems of the world today and, if you’re like me, unless the issue is already close to your heart, words alone may not be enough to register.

Salim Khan, 3 year old pneumonia survivor from Bijnor, India by Ándre J. Fanthome

A photo contest seems like such a simple thing, but it’s a way to enable a problem to reach into our hearts and minds.  Pneumonia is a leading killer of the world’s young children, but the disease has very real and practical solutions.  Although I see the statistics and understand the scientific pathways, nothing impacts me more than seeing how the disease affects families and children or reaches the heart of a pediatrician.  These moments are often captured powerfully with the click of a camera.  While one child with pneumonia may seem just like a number to many, it is these stories and images that can make a difference.

Photoshare, Kids 4, Health, the International Vaccine Access Center at Johns Hopkins Bloomberg School of Public Health and The Global Coalition Against Child Pneumonia are sponsoring a photo contest to find the image that will make a difference in our minds.  Nikon will award digital cameras to category winners.  And, if you’re fans of Ann Curry of the Today Show and Nicholas Kristof of the New York Times, you’re in luck.  They, along with a professional photographer, are the judges.   Submitting a photo that jumps off the page and tells an important story would be a great way to get your experience and talent, or that of a friend, family or colleague in front of our celebrity panel.  For more information, click here.  Details on the time and place of the photo exhibit to unveil contest winners and finalists will be announced shortly. (more…)

Beth Sufian is one of the oldest survivors of Cystic Fibrosis. As an attorney, the Houstonian has fought for the medical rights of thousands of patients — even from her own hospital bed — and travels the country teaching parents how to advocate for their children.
She took a few minutes to talk with Disruptive Women’s Wendy Grossman.

Q: You’ve dedicated your career to fighting for people living with CF.
A: Yes.

Q: Can you tell me a little bit about your work?
A: Working with CF is about half of what I do — the other half is serious medical conditions.

Q: Like what?
A: I run a hotline for people with CF from all over the country to call and get information about health insurance and benefits and rights and employment. We’ve been in existence since 1998, and we’ve had about14,000 calls.

We have another project with CF, where we help people with their application for Social Security. We have 100 percent success rate to get benefits for people who can’t work or for their children. We’ve helped 139 people get coverage or government benefits who otherwise wouldn’t have benefits.

Q: Why did you start that project?
A: We had a lot of people calling the hotline who needed help. There are no attorneys that help people with their initial applications for benefits. Because you can’t get paid. And, usually, people don’t have the money to pay if they’re stopping work when they’re sick. We did a trial project funded by a drug company grant. We did 25 people and we successfully got all of them benefits. So we got more grant money to open up to people with CF. This past year, Social Security has gotten a million more applications for Social Security Disability benefits. Due to the economy, people with disabilities lose their jobs and can’t get other jobs. They’re trying to work.
We knew if the application went in with an attorney representing — which is rare — then the application might have a better chance of succeeding.

And then I represent lots of people with different disabilities. In those same areas insurance benefits, etc. And I do some work to try to make sure new drugs and new therapies coming out are covered with insurance.

Q: So you and your younger sister were both diagnosed with CF when you were 9?
A: Yeah. I was 9 and she was 7.

Q: How old are you now?
A: I’m 44. That’s old for CF. That’s really old. The average age of death last year was 25. Half the people were younger, and half were older.

Q: You’re a walking miracle.
A: Yup, I guess so.

Q: So what are you doing to stay alive? (Note, I’m ashamed I asked that. I apologized.)
A: To stay alive? I do a lot of treatments. Now there are medical treatments to better help manage the disease. It’s still difficult. We had a new drug approved last week called Cayston, it’s an inhaled antibiotic. And I’ve been on the study for about three years. And I testified at the FDA hearing. When the company appealed, I testified on December 10th why it was so important for people with CF. It got formally approved last week. Monday was the first day of last week.

Q: What do you like about that drug?
A: My lung function went from 50 to 80 percent. Which is unheard of. You can never get back that much lung function. It is much easier to breathe. I have less mucus on my lungs when I’m on it. Also, because I had less lung infection, I was able to gain about 15 pounds. Which I know most women don’t want to do – but with CF it’s hard to gain weight. And when you’re low weight, you get sicker. Right now I’m 118. And I’ve never been more than 105 pounds. Overall, my health is just dramatically better.

Q: That’s great.
A: I was really fighting hard. Otherwise, if it wouldn’t have been approved we would have to wait another two years to do another study. That was not acceptable. It was very frustrating we had 18 months from when it was denied to when it was finally approved. We don’t have that many drugs. We have three, FDA-approved drugs total. And it’s such a serious disease. It seemed clear that we needed to have this and not wait another two years. It’s been a good week.

Q: I read that when you were first diagnosed the doctor told you not tell anyone, because you’d lose your health insurance.
A:  Correct. He told my parents that.

Q: Why?
A: Then there was no HIPPA laws – there wasn’t a law saying they can’t cancel you.  Back then it was, 1975 and they could cancel your policy for whatever reason they wanted. That was true. He was right. Although it was difficult.

Q: What did you do? How did you get treatment if you didn’t tell people?
A: There wasn’t any treatment to get. So we were going to the doctor maybe every four months for him to listen to us. But he didn’t have any medicine to give us. There wasn’t any approved drugs for CF then. And life expectancy was 10.

Q: Tell me about how you started your practice. I read a doctor asked you to help a patient after you graduated law school? And then another, and then another?
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By Santi Bhagat, MD, MPH. Health Care Reform is off to a good start.  A couple of days ago, I blogged on the debate between the insurance industry and the administration about the interpretation of this new law.  Hats off to insurers for making the right choice, right away, to heed regulations that are forthcoming from Health and Human Services.   I first heard this through the grapevine at the Disruptive Women Breakfast Series this week from Stephanie Cohen, the expert panelist representing the insurance industry.

The law is intended to require insurers to issue policies that provide a full range of benefits for all children with pre-existing conditions starting in September 2010.  That means insurers can no longer refuse to cover children with pre-existing conditions under their parents’ plans, even if the children never had insurance.

This law has far-reaching ramifications.  A recent story about a newborn who was denied coverage at the age of a mere 9 days highlights how critical this law is.   Born with a congenital heart defect, Houston Tracy underwent lifesaving open heart surgery when he was just 4 days old.  His parents cannot afford insurance for themselves, being small business owners, and have individual policies for their older two sons.  After being charged and given the run-around by the insurance company, they resorted to enrolling their newborn in the state’s high-risk pool.

The big question now is how much will insurers charge for these policies.  If the price tag is too high, parents will not be able to afford to purchase policies, and in effect, coverage will be denied to these children.

It is not clear whether HHS regulations will speak to this issue.  The administration will be watching the insurance industry closely.   So will we.

By Santi Bhagat, MD, MPH.  Policymakers and insurance industry are battling over a key feature of health care reform.  As the president proclaims the bill will cover and protect all children with pre-existing conditions this year, the insurance industry is contending that the law reads differently.   

Congressional leaders are outraged that insurers are trying to wriggle out of their legal responsibility to insure new children who have pre-existing conditions. 

1. Insurers are interpreting bill language to mandate coverage of pre-existing conditions of children only if they are currently enrolled in plans, but not for new, uninsured child customers with pre-existing conditions. 
2.  The administration vows to fix this by having Health and Human Services (HHS) issue regulations next month to clarify the law’s intent to both provide access to insurance and a full range of benefits for all children with chronic conditions this year. 
3. Insurers plan to act on legislation language.  They will not say how they will respond to regulations and forecast that the courts will be the final arbiters.
4.  HHS spokesman and chairmen of Congressional health policy committees in the House of Representatives assert that the administration’s solution adequately addresses this problem.  
5. Citing experiences in other states, insurers are saying that covering children with chronic conditions now will lead to higher rates that may be unaffordable.  They believe that it is better to wait until 2014, when the risk can be spread since most Americans will have to be covered that year.
6. Regardless, insurers are free to charge what they want until 2014, when health status can no longer be used to calculate premiums. 

This is no small matter, for one in five American households, 8.8 million, has at least one child with a pre-existing condition.  Contrary to popular thought, most of these children are covered by private insurance.  The economic and job crises have impacted the ability of parents to maintain employer-based health insurance, forcing them to turn to the exorbitant individual market.  Children with individual coverage and who go without insurance for two months are at the greatest risk of being denied access.  From September 2010, the health care bill is supposed to prohibit insurers from denying individual and group coverage to children based on health status.

Health care reform does provide for a $5 billion dollar insurance pool of last resort that these families can turn to.   Hopefully, this mechanism will help families until this problem is straightened out.

Parents cannot wait to obtain coverage for their children who are in urgent of need of health care now.   Children are not simply little adults:  denying access and care to chronically ill children denies them the ability to grow, develop, play and learn.  As we watch the deliberations and wait for implementation of this piece of law, our children and families are losing precious time that can never be recovered.

AIDS is here to stay. At least for now…. It didn’t seem that way during the 1980s. As we learned more about HIV and its manifestations, the predominantly male and intervention-driven scientific world organized itself to find a solution within a decade or two. After all, the war against smallpox, polio and other infectious diseases had been won with medicines, vaccines and public health efforts. Well, here we are, way into the third decade, and despite the achievements, the pandemic continuous to grow. What lessons can we draw from the cumulative knowledge, organizational responses and manifestations of solidarity?

The first decade of AIDS was marked by fear, death and loss. AIDS was visible in the faces with Kaposi sarcoma and the wasting of the bodies. We feared the contagion, death, the loss of loved ones, the unknown. And among so much fear, we blamed others: the “4 Hs” (Haitians, hemophiliacs, homosexuals, heroin addicts), sex workers, … even monkeys. Conspiracy theories flourished to explain the origin of the virus: a biological weapon, a laboratory experiment gone wrong. But the first decade of AIDS gave birth to the very essence that made it a disease like no other. A powerful medical model was challenged by participation. A movement was created. Never again would patients be patient. AIDS forever changed the way health would be delivered.

The second decade of AIDS was marked by hope; hope for a treatment, a vaccine, a cure. Science took enormous strides. Antiretroviral therapies created miracles: the Lazarus effect, they called it. HIV became a chronic condition, not a death sentence. While a cure and a vaccine were still to be found, the benefits of the quest advanced all aspects of clinical care. The breath of fresh air that came with so many developments also fueled a stronger coalition. Communities began to take control and demand action. People living with HIV and AIDS showed their faces, let their voices be heard, and influenced program design and policy. Access to treatment became a unified call.

The ongoing third decade of AIDS has been marked by money. The unknown, stigmatized disease that nobody wanted to touch in the beginning of the pandemic came of age drawing the attention of global leaders. New public-private-partnerships such as the Global Fund to Fight AIDS, Tuberculosis and Malaria were created to unleash extraordinary levels of funding. The movement peaked with this expanded response but money did not buy a solution.

(more…)

If medication adherence is a problem for adults, consider how difficult it is for young people with chronic medical conditions.

Alternate flavorings, formulations, and suspensions can help the medicine go down in children.  But what is the solution when taste is not the problem?  One approach we need to take is to put the young person center and first.  Talking past the child to the parents is a practice that continues today and even with many young adults patients.  If we want young people to succeed in self-medication management, they must be the drivers of their care.

Child-centered care:

 Psychoeducation: As soon as the child is able to participate, he needs to be educated about his condition and medication regimen so he understands what his happening to his body.  Participating in the decision-making process, e.g., whether to take the morning medicine after brushing teeth or at breakfast, protects the child’s autonomy and sense of control.

Contracts help in getting the young person to take ownership, and patient records are an age-old but effective method of monitoring adherence.  Children can check boxes on printed forms, manually or computerized; parents can help by incentivizing adherence with tokens or rewards.  Encouraging the child to share the record in the next medical visit further increases his autonomy – a critical issue when one loses the sense of control over one’s body.  Physician follow-up is critical to promoting adherence, e.g., counting pills, checking records.

Communication skills and understanding the young person’s perspective are key ingredients to building trust. A non-judgmental attitude along with a willingness to negotiate and temporarily modify medications can help a young person understand the need to adhere to a regimen.

Problems may surface when the child enters adolescence and considers engaging in risk-taking behaviors.  This is also the time to foster health self-management and start the transition process to adult-oriented health care.  As the teen matures, he must be educated and encouraged to learn about his condition and management. The physician should work with the family to develop a step-wise approach to increase responsibility, e.g., first succeed at level 1 for x months before moving up to level to 2.  For example:

1. Monitor patient-recorded adherence chart
2. Make doctor’s appointments and record on chart (physician visits are associated with adherence)
3. Order prescriptions and record on chart
4. Fill medication trays

(more…)

As I mentioned in my post last week, Disruptive Women in Health Care is tackling the issue of drug adherence, often referred to as America’s other drug problem.  From a health policy standpoint, the issues cross financial, clinical, behavioral, and cultural boundaries.

Over the next two weeks, Disruptive Women and guest bloggers, all experts in their respective field–each representing a different perspective — patient, physician, nurse, pharmacist, researcher, behaviorist, policy analyst, distributor, to name a few–will share their analyses, opinions, and solutions.

At the completion of this series, we will compile an e-book as we did when we tackled the issue of Comparative Effectiveness Research.

THE SCOPE OF THE PROBLEM

A new report, Thinking Outside the Pillbox: A System-wide Approach to Improving Patient Medication Adherence for Chronic Disease, issued by the New England Healthcare Institute (NEHI) found that patients who do not take their medications as prescribed pay a price in poorer health, more frequent hospitalizations and a higher risk of death.

Collectively, noncompliant patients incur up to $290 billion annually in increased medical costs–that’s $290 billion in avoidable medical spending every year, according to the NEHI report.

This is not a new problem, nor is it unique to the US.  In 2003, the World Health Organization (WHO) issued a landmark report entitled Adherence to Long-Term Therapies in which it noted:

Adherence to therapies is a primary determinant of treatment success. Poor adherence attenuates optimum clinical benefits and therefore reduces the overall effectiveness of health systems.

“Medicines will not work if you do not take them.”  Medicines will not be effective if patients do not follow prescribed treatment, yet in developed countries only 50% of patients who suffer from chronic diseases adhere to treatment recommendations. In developing countries, when taken together with poor access to health care, lack of appropriate diagnosis and limited access to medicines, poor adherence is threatening to render futile any effort to tackle chronic conditions, such as diabetes, depression and HIV/AIDS.
This report is based on an exhaustive review of the published literature on the definitions, measurements, epidemiology, economics and interventions applied to nine chronic conditions and their risk factors. These are asthma, cancer (palliative care), depression, diabetes, epilepsy, HIV/AIDS, hypertension, tobacco smoking and tuberculosis.

In the intervening years since the WHO issued its report, adherence has become more problematic.  Numerous reports highlight the ongoing challenges, which are especially critical in the mental health arena.

A study in the American Journal of Psychiatry found that close to 60% of schizophrenics who were prescribed anti-psychotic drugs did not take the medication as prescribed by their physicians.  “We looked at adherence to anti-psychotic medication because they form the backbone of treatment for schizophrenics,” said Dr. Dilip Jesete, co-author of the study.  “These medications are good, but only work when taken properly.”

The study found that psychiatric hospitalizations were higher for people who did not take their medication as prescribed.

When schizophrenics, a disease which affects over 2 million Americans, do not take their medication, they are at risk for dying by suicide.  Four out of ten people who suffer from schizophrenia attempt suicide and one in ten die by suicide.

SOLUTIONS

Despite the complexity of adherence related challenges, a number of promising solutions, innovative responses and well-researched efforts are underway.  Many of these will be described in greater detail in our Drug Adherence series.

Some of these include:

• Text message alerts to remind patients
• Greater use of health care teams
• Integration of health information technology
• Creation of online and offline medication management systems, reminders
• Health e-games
• Insurance reforms
• Public awareness campaigns
• Patient education
• Mobile phone applications
• Research in gender-based barriers

We look forward to your comments and input as we shed light on this critical policy issue.