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.

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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

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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.

It has been estimated that 3 out of 4 people report that they do not take their medications as directed, resulting in hundreds of billions of dollars annually in related medical costs and an enormous number of hospital admissions and readmissions.

The reasons for this are complex and varied.  This is a particularly vexing challenge for young, chronically ill patients, for people with mental health diagnoses and for the elderly who may suffer from memory impairment.  Anyone on a complicated drug regimen knows how committed one must be to remain adherent.

For some, cost is an issue while for others side effects can be unpleasant, travelling can compromise the best of intentions as can the need for refrigeration when none is available.  Some patients must take some drugs on an empty stomach and others on a full stomach.  Some patients are simply not ready to accept they have a serious, or lifelong illness. It is complicated.

Because the implications, both clinical as well as financial, are significant, we have invited a number of our Disruptive Women bloggers, as well as some other experts in the field, to join us in a series of policy posts on this critically important issue.

Beginning next week, on October 19th, we will launch our Drug Adherence series which will analyze this challenge from a number of perspectives:  patients, providers, researchers.  In addition, we will also offer innovative solutions.

At the completion of this series, we will compile all the posts into an e-book, just as we did when we tackled the issue of Comparative Effectiveness Research and created our Comparative Effectiveness Research e-book.

If  you or someone you help care for has experiences you would like to share, or you have research, solutions and other thoughts on this topic, I hope you will share them with us.

Several months ago I was attending a funeral.  After being introduced to a relative’s relative, my family member asked me if I knew what had happened to Mr. Smith, pointing to the elderly man walking with a cane.  It was a miracle my family member said.  A miracle I wondered, looking skeptically at him.  Yes, Mr. Smith was having a CAT scan and the results showed that he had pancreatic cancer.  A miracle I asked, why so.   As it turned out the patient, who in his early 80′s went to his doctor complaining of not feeling well.  Abdominal pain. Distention.  General malaise and discomfort.  One thing led to another and CAT scans were ordered.   And as the family story goes, “by mistake” a CAT scan of his pancreas was performed.    And as I understand the story, the tumor was removed.  No metastasis was found.  The gentleman was advised to be sure to come in for his scheduled checkups and to tell his doctor about any subsequent health problems, and to be prepared for follow-up tests.   He was told that some tests will be repeated in order to see how well the treatment is working.  The recent death of actor Patrick Swayze reminds us that pancreatic cancer is so difficult to detect and diagnose early. There aren’t any noticeable signs or symptoms in the early stages of pancreatic cancer.  The signs of pancreatic cancer, are often like the signs of many other illnesses.[1]   Hmmm, I agreed, a miracle by accident.

We won’t ever be sure what could have been if we had paid more attention to the signs and symptoms. Mom had died in October 2006. Dad had visited her in the hospital and the rehab center and the nursing home for seven months, every day, day after day after day. They had been together for 50+ years. And he had been sure to tell the story of their meeting and their marriage and their lives together to anyone……. well actually to everyone that he met. After mom passed, he slowly managed to go on with his life without her. It was not easy. He had to learn how to use the microwave, how to make coffee, and how to cook. He mastered the art of grocery shopping and doing his own laundry. One day at a time we encouraged him. Slowly he managed to pick up the pieces and take care of himself. Or so we thought. Sure he often spoke of missing her. And he mentioned having trouble sleeping and not really feeling like eating. He told us that he often would get up in the middle of the night and then take naps during the day. He mentioned being invited to join friends for lunch or dinner but not feeling well enough to do so. He seemed more and more tired and uninterested in life. Dad we asked, did you go for a walk today? No, no, no he said, it’s too hot. Dad we said, perhaps you should see the doctor. No, no, no, I have an appointment next month. Dad we said, perhaps you could talk to the Rabbi. No, no, no, I don’t want to bother him. Dad, we said, your friends want to see you. No, no, no I am not good company. Dad, we said, please come visit ….. the grandkids want to see you. No, no, no…it’s just not that easy to travel at my age, he would say. Dad we said, why don’t we all take a vacation together? No, no, no he said, it’s just not easy to get around. Dad we said, why don’t you see a counselor or join a grievance support group? No, no, no, he said, I am just not ready. Dad, we agreed is really, really depressed about mom’s passing… his grief seems insurmountable. He’s really having a hard time being by himself. But even so maybe we should call his doctor…maybe it’s more than depression or grief. It looks like he’s losing weight and he’s always tired and seems to be sleeping more and more. The pain of his loss never seemed to subside. His grief seemed to appear mostly in physical ways: restlessness, exhaustion, sleeping problems, appetite changes, body aches, stiffness of joints, weight loss, and increased fatigue. But two years later he was still suffering much as he had back in 2006. Maybe it was time for us to insist that we go with him to his doctors.

Hmmm said the doctor…..weight loss, tiredness, loss of appetite, decreased energy, and depression. Let’s run some tests. Hmmm said the doctor lets get a scan. Hmmmm said the doctor I think we need an MRI. Hmmm said the doctor, I want to get a liver biopsy. Hmmm, said the doctor I am sorry but its pancreatic cancer and its spread to the liver and given your dad’s age and condition, I don’t think there is much we can do. Dad died in November 2008, two months after his diagnosis.

In the midst of furious showdowns on health care reform at town hall meetings, a moment of peace surfaced in Montana when President Obama drew bipartisan applause after calling a mother heroic.  This mother of two had voiced her concern about the Medicaid program she relied on for her child who has multiple chronic conditions.  The president reassured her and went on to discuss how our disease-care system does not proactively manage chronic conditions.

Children and young adults with chronic medical conditions and disabilities (CMCD) need proactive management now and for their entire lives.  Our health care system fails to serve the young people who need it the most.

Children with CMCD are completely dependent on adults for their health care.  Poor health management negatively affects their growth and development, education, and socialization – and drags the entire family down.  As the mother of a young adult with CMCD and the founder of a non-profit created because of our experiences with poor quality health care, I cannot understand why this population is not a major focus of health care reform.

One path to start on is to build on successful programs to create a comprehensive system of care.  Take a look at the 35% of children with CMCD covered by SCHIP/Medicaid. Medicaid provides a specialized set of comprehensive services known as EPSDT, Early Periodic Screening, Diagnosis, and Treatment Program. The current model of care in favor for chronic conditions is the medical home. First conceptualized by the American Academy of Pediatrics for children with CMCD in the 1960s, the medical home has yet to become the standard of care for children with CMCD in Medicaid.  Pairing EPSDT with the medical home would be a step forward in developing a system of care for children covered by Medicaid.    Another step is to expand EPSDT and medical homes to cover the remaining publicly covered children with CMCD enrolled in SCHIP.

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