My journey from patient to consumer of health care.

I was only six years old when, on a chilly December morning, I watched my grandmother casually wander into the bathroom for a shower. That was the last time I saw her alive. She was 66.

Almost four decades have passed and the image of my father and step-grandfather violently breaking down the door and carrying out her naked body into the light has remained vivid in my memory. We never knew for sure what took her life.

As a kid, I learned to get used to my heart skipping a beat or speeding up for no apparent reason. I knew that if I would stop just for a moment and wait, the discomfort would go away. Palpitations were quite frequent and I assumed other kids had them too. As an adult, I often thought they were a sign of an unbalanced diet, or the result of too much caffeine and stress.

But then, at 37, I passed out after running up a flight of stairs to catch a commuter train. My heart had gone faster to keep up with my body’s demand for oxygen but had failed to slow down after I stopped running. It just continued to beat faster and faster. I fainted on the platform that day and missed my train.

This is where the scariest chapter of my life begins. After that syncope, and a year of misdiagnoses, I was finally told I suffered from a somewhat common type of genetic heart disease: Hypertrophic Cardiomyopathy.

HCM afflicts 1 in 500 people worldwide, and may cause the heart to develop a deadly arrhythmia, resulting in sudden death. The Hypertrophic Cardiomyopathy Association, HCMA, says on their Web site that nearly 50% of all cases on file are of patients who lived with improper diagnoses for many years.

My first cardiologist suspected mitral valve prolapse (MVP), and my second one never told me I was at risk of sudden death. Per the latter’s advice, I resumed my life as before, unaware of the serious risks. I had to suffer two additional syncopes before I decided that I needed to take matters into my own hands, educate myself about my condition, and seek the care of an HCM specialist. And in my quest, I turned to the Internet for help.

According to iCrossing, a global digital marketing company based in Arizona, 59% of adults use online resources to obtain health information, versus 55% who rely on their doctors. Their study “How America Searches: Health & Wellness” (January 2008) indicates that the Internet has for the first time, ranked ahead of doctors as the number one source of health- and wellness-related information.

But most importantly, the study revealed that social media are increasingly relevant to health and wellness, with 34% of health searchers using Wikipedia, online forums and message boards to delve into health-related topics.

It’s a radical finding: patients aren’t learning from their doctors or even from Web sites as much any more. Patients are learning from each other.

In my experience, as soon as I realized my doctors weren’t giving me the answers I sought, I joined the HCMA online community and got plenty of answers from a network of patients like me. It was the beginning of my transformation from patient to consumer of health care.

After changing doctors and receiving an implanted cardioverter defibrillator (ICD), I joined two other patients and created a local support group. The Bay Area ICD User Group's mission is to educate patients on ICDs and ICD therapy, address concerns and questions, facilitate improved communication with our doctors, and to serve as a network for sharing experiences.

Today, I no longer think of myself as a lonely patient. I have become an empowered medical consumer who finds comfort, validation, and knowledge in the experiences of others like me. I have also learned to embrace my heart disease. It has given me the opportunity to better myself and to meet many wonderful people along the way.

I now realize that my grandmother’s sudden death was likely due to an undiagnosed cardiomyopathy—perhaps HCM. All we knew back then was that Grandma Lourdes had an “unusually large heart.” But as a kid, I always knew that.

Above, from right, grandma Lourdes, me (age 6), mom, and a friend.

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HCM patients with Blue Cross Blue Shield coverage in danger of loss of access to HCM center in Boston.

This news does not directly affect us in California, but it's a big deal to our HCM friends who are treated at the Hypertrophic Cardiomyopathy (HCM) clinic at Tufts Medical Center in Boston, MA.

The HCM Center at Tufts Medical Center is the first such treatment and research facility in the Northeast. It provides patients and their families with comprehensive, multidisciplinary treatment for this genetic heart disease that affects 1 in 500 people. Sudden cardiac death (SDC) due to HCM is a tragic complication of this disease and ICDs are an effective treatment to prevent SCD in select patients. The risk of sudden cardiac death ranges between 1-5% per year.

On January 31, 2009 Tufts Medical Center's contract with Blue Cross Blue Shield of Massachusetts (BCBSMA) will expire (read the news coverage here).

This means that those patients with procedures already planned will have a grace period of between 30 and 90 days to complete care. However, after that, their plan will no longer cover Tufts as a network provider. Patients with HMO coverage will not be permitted to go to Tufts and those with PPOs and other plans will be viewed as out of network.

Whether you personally have BCBSMA or use the services of Tufts should not matter. We all must speak out about this issue. Write to BCBSMA to urge them to negotiate in good faith and for the benefit of their patients. Your community, your family, your HCMA friends need your support now.

Watch this important message from Lisa Salberg, president of the Hypertophic Cardiomyopathy Association (HCMA).



Act now! The HCMA is asking everyone to write to grievances@bcbsma.com. You may use this sample letter:

To: Blue Cross Blue Shield of Massachusetts

I am a supporter of Tufts Medical Center and I value the hospital and its physicians as high-quality, efficient providers of excellent medical care. I was surprised and dismayed to learn that Blue Cross Blue Shield of Massachusetts is not paying reasonable rates for the services of these important health care providers at Tufts Medical Center and Floating Hospital for Children.

I believe this is unfair. I hope Blue Cross realizes that it must provide Tufts and its physicians, fair and reasonable reimbursements so that they can continue to offer expert care, as they have for over 200 years.

I strongly urge Blue Cross Blue Shield of Massachusetts to offer Tufts Medical and its physicians a reasonable rate increase and to resolve this issue as soon as possible.

Sincerely,
NAME HERE

Please take a moment to urge BCBSMA to negotiate in good faith and for the benefit of their patients. Tufts Medical Center and Floating Children's Hospital are a top rated, high quality system with a proven track record of cost effective health care, and one of only 17 programs nationally with a specialized HCM program.

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