Healthcare Reform Is Personal For Me

I recently had the chief of staff of a Member of Congress from my own state deny my request to meet with him: “We can’t meet with you because you’re a vendor; you’ve got too many special interests.” Wow, to have my entire life history with all of its many rolls and responsibilities (patient, son, family caregiver, patient advocate, voter, American, campaign donor, activist, speaker, writer, Intel employee, volunteer for multiple non-profits, etc.) relegated to “vendor” is infuriating. And to have my request for a meeting denied because I have “special interests” begs the question of who out there is advocating for something without an interest or agenda?

So let me make my motives clear: everything I am advocating for in healthcare reform is in my own best self-interests. I say that proudly, unapologetically, and frequently. I selfishly want healthcare reform to happen... I want it to happen now... and I want it to be significant enough to deserve the name “reform” since that is what has been promised to us. And I want it... with every role and responsibility I can imagine myself having. As I see it, there are two fundamental changes the President is advocating for at the highest level: 1) covering everyone; 2) paying for quality of coordinated care instead of quantity of visits. I am very convinced that both of these will be good for me... with two examples that come to mind.

First, as a patient who has been dealing with multiple chronic conditions across many states and jobs for the past twenty years, I have lived much of my adult life with some fear of losing my health insurance, even though I have been blessed with some incredible opportunities. For example, I worked for Paul Allen’s think-tank starting back in 1992, where I found myself in the heart of Silicon Valley, with some amazing researchers and entrepreneurs, during the height of the dot.com explosion. Thus, I had many chances to join startups—places like Netscape, eBay, Amazon, and Google that no one had heard of yet—but I always turned them down. Risking a move to a new insurance plan or new state with a dreaded “pre existing condition” was simply too frightening.

Don’t get me wrong—I’m not looking for sympathy here. I made a great decision to move to Intel ten years ago, where I not only have an amazing job but also excellent insurance and support from my company. The issue is that many, many people are not so lucky. And even those with amazing assets can find themselves in precarious situations if they lose their insurance. A good friend of mine I’ll call “Bill”—a former researcher from one of those famous Silicon Valley startups that made it big time—is currently broke and on Medicare and Medicaid. It boggles the mind, but Bill had to “spend down” his entire life savings after a surprise cancer diagnosis devastated him during the six weeks between jobs when his Cobra ran out and his next job started. A clerical error, a missed deadline on his part, and unbelievably bad timing in developing a “pre-existing condition” drove him from millionaire to personal bankruptcy in a frighteningly short time. Now Bill is likely to spend the rest of his life trying to recover not from the cancer, which he survived, but from the debt and exhausting bureaucracy that almost destroyed his life.

I’m not trying to do my own fear mongering here—we’ve had enough of that—but I am baffled as to why more people don’t see that many of us already live in fear with today’s current healthcare system. We want reform to end that fear. There are far too many people in Bill’s precarious situation, and far too many millions more who never even had the chances or resources that Bill started out with. What an amazing thing it would be to know that you could no longer lose your insurance coverage, even if you lost your job, moved to a new state, or had a pre-existing condition. Now that’s a self-interest I can sign up for!

Second example... as a patient advocate for 20 to 30 people each year who are dealing with the shock of a new cancer diagnosis, I often see first-hand the inefficiency, suffering, and dangerous medical errors caused by the lack of coordination of care amongst a patient’s doctors. “Rita,” herself a rehab nurse from Portland, was someone who I recently helped deal with her cancer experience from diagnosis through treatment to recovery. Her condition was very rare—we both spent weeks in libraries and online trying to research her options—and the more we learned, the more confused we became. We must have faxed more than 100 documents to various specialists, experts, clinical trials managers, and researchers in hopes of getting her on a clinical trial for her condition.

We ultimately succeeded in getting Rita into a trial. Her care team included at least 4 physicians in Portland, 2 in Houston at MD Anderson, 1 at Fred Hutchison in Seattle, and 2 others. She had several major food and drug allergies, which we duly noted on every one of those forms they make you fill out each visit. Her chemotherapy and immuno therapy trial ended up being very hard on her, with dangerous blood pressure and other problems that occurred. There were so many doctors involved in her care—but no one person driving it—that they missed the fact that three of them had prescribed similar blood pressure medications for off-label purposes, each with a different name. The pharmacist didn’t catch it because of the complexities of dealing with a cancer case. Another doctor prescribed her an antihistamine—administered while she was asleep—for a rash that appeared while she was in the hospital for infusion, somehow missing the chart note of her drug allergy. The end result was a perfect storm: kidney failure from the drug overdose, a rush to the ER for the allergic shock, and about a month setback of hospital costs, dialysis, suffering, and added recovery time.

I’ve frequently had similar experiences myself—not with as dramatic consequences—but with my various specialists each acting independently, seeing the world only through the lens of their particular expertise. Thus, they miss the complexities of all my conditions. They miss getting the right “medication cocktail” that takes me, the whole person, and my care goals into account. Again, the lack of coordination and incentives for coordination of care are the truly scary things to me. Again, the possibility of having a primary care champion to be my common-sense advocate across all those specialists is a special interest I can sign up for!

For me, and for all of us, healthcare reform should be personal... for all of the roles we find ourselves in. In a country of such wealth and resources, I find it appalling and unacceptable that we’ve got many millions of people who are un- or under-insured or that someone like Bill can find himself in poverty in a flash. In a country so focused on freedom and choice, I find it hypocritical that many people have to limit their career choices to companies where they can maintain healthcare coverage. In a country so filled with technological marvels, I find it unforgivable that our care can’t be better coordinated across time and place for someone like Rita. Healthcare reform is a chance to remedy these fundamental flaws…and to free us to live up to our potential as individuals and as a nation. While the “vendor” in me certainly wants reform to give Intel a chance to compete in an emerging global marketplace for personal health technologies, it is also the “patient” and “patient advocate” in me who want us to create a better, more coordinated, home-based model of care. And not just for the powerful, wealthy, or lucky... but for everyone. That would be a special interest, indeed!