Category Archives: healthcare information

We Need a Champion We Can Trust

Some days I am amazed at all of the help we have gotten with A through the years.
Some days I am amazed at all of the help we have gotten with A through the years.

In the past two weeks, I have sat through a class on building trust with an organization and a round table discussion between the president of the American Board of Internal Medicine and a broad cross section of patient, consumer and purchaser organizations . At first, I did not link the two topics in my head until somebody at the round table described what patients want from their doctors as “someone who will champion me and my needs.”

When I heard this, I thought it summed up why I thought so highly of my favorite doctors. Of course, I want them to know all of the latest best practices, but as a patient I have little means to ascertain whether I am getting good or bad service in terms of medical quality. What I really need is somebody whom I can trust to do the multitude of little things to make me buy in to a plan of action to improve my health. Nothing builds trust faster with me than knowing the doctor will see my needs met, even when I know I am imposing a huge burden, sometimes bigger than I feel comfortable requesting.

When I think of doctors for whom I have the highest regard, I think of our children’s primary care doctor. Early in our fostering, my wife took our oldest to see her. Not only did she read through the medical history (2 big, full binders), she asked probing questions, followed up with requests for medications, gave needed referrals, and finally she filled out a huge application with a long letter detailing A’s medical history in an effort to get A into REM. REM is a program for rare and expensive case management. That A was ultimately denied did not matter. Her effort identified her as a champion, as somebody who had our kid’s interest in mind. As she has run for public office in recent years, it’s with a heavy heart we always vote for her. We vote for her because she is a champion, but we cringe at the thought of losing her energy and time as a doctor. She is one of the people I think of when I think of a quote from Andrew Bridge in Hope’s Boy,

“Some people are born for battles. Their bravery endures, regardless of frailty or strength. They are the ones we look to and our admiring hearts tell us, ‘They’ll know what to do.’ They are the great winners and losers of history. We remember them less for their outcomes than for their glorious acts. And, with the gentle wash of time, they become our heroes.”

When I think about my neurologists whom I have trusted, I think about why I trusted them. I trusted them because I felt my experience mattered to them. I felt as if they listened rather than heard what I said. They answered my questions and coaxed out what I valued in my treatments and life. I was and am willing to risk greater harm in order to preserve my abilities and life today. The best doctors have listened and have been responsive when I asked for help, and in turn I try not to ask often (a point of contention between me and my wife who thinks I need to ask more).

As I reflect back on the trust class and ABIM’s goal of requiring certified doctors to look at their own practices with a critical eye towards improving patient care, I come back to the comment from the round table. We patients want our doctors to champion our healthcare with us. In order for a patient to feel this bond, we have to feel trust.

I will readily admit much of healthcare today is set against the formation of this trust. Doctors have very limited time with each patient. The paperwork and administrative functions they and their staff are called to do by government, insurance and other organizations seems daunting. As a patient, all I can say is I am asking for a champion and a champion’s time/attention. I know I ask for a lot, always have. I just try not to ask often.

When thinking about how I would want the medical profession to change and how we as patients could measure a doctor’s trustworthiness which includes both intent and ability, I realized there are a few things I need to feel my doctor knows to do and how. I want them to know not only what treatments I may need, but how to chose amongst options and how to obtain needed treatments. The best have been ones who know how to make this easiest for me in terms of money and time, like the doctor who suggested I contact the pharmaceutical company for copay assistance. I want doctors to know how to be approachable. For some this comes easy, but I have certainly seen those for whom it is hard. I want a medical profession where criticism is seen as opportunity for improvement and thus constantly sought at all levels. The openness to being eternal students is critical. We can all improve

There is a kid’s riddle, “What do you call the person who graduated last in their class at Medical school?” The answer is, of course, “doctor.” In my ideal world, the follow-up question would be what do you call them and all the others who graduated ahead of them?” The answer should be just as obvious, “students.”

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Massive Pharmaceutical Cost Increase Seems Imminent

Are Pharmaceuticals forcing us to choose between our health and our country's financial health?
Are Pharmaceuticals forcing us to choose between our health and our country’s financial health?

A few weeks ago, I wrote about how patients, insurance companies, and pharmaceutical companies are seemingly on a path towards spiraling drug costs which have the possibility of sinking the U.S. healthcare system (Everyone Acts For Themselves). The day after I wrote that piece, Senator Ben Cardin was taking questions from people at a town hall-style meeting at my work. When nobody wanted to be the first, I stood up and asked him, “Given the higher drug prices for chronic conditions are consistently being placed on a higher copays tier by insurance companies and pharmaceutical companies are paying some of these to preserve the patients’ access to the drugs, does congress have a plan to slow the incoming onslaught of higher costs?” I then gave my Tysabri example and some information on the new drug to cure Hepatitis C.

After some filler while he composed his thoughts, he said Congress is actively monitoring prescription drug costs, but at this point there is little momentum behind any fix as the various stake holders have a lot of influence to kill any proposals. Yikes.

Hepatitis Impact on Medicare

This week, we got some information on the impact of the new Hepatitis C drug on Medicare. Last year, Medicare spent $4.5 billion dollars to treat Hepatitis C, and the drug was not available all year long. Keep in mind, Medicare spent $286 million on the other older Hepatitis C drugs in 2013. That is a huge increase, and potentially it will grow fast. With 350,000 Medicare beneficiaries believed to have hepatitis C, if they have access to Sovaldi which costs $87k, Medicare is looking at a potential liability of more than $30 billion.

This is only one condition.

These numbers are just for Medicare, not Medicaid or private insurance. According to the CDC, there are approximately 3.2 million people in the US with Hepatitis C. Even if the new competition with Sovaldi cuts the costs in half, we are talking about $139.2 billion dollars to treat one condition.

At some point we will have to change the question from “can we” to “should we.” We need to make sure we are answering the right question. To me, the natural follow-up is if we can but maybe should not under the current system, do we live with the answer or change the system? There are a lot of methods to change the system which might work. My current favorite is the changing of patent law to allow the U.S. government to buy any patent for X dollars. It would have to be a lot to avoid stifling innovation, but what if the U.S. reserved the right to buy a patent for $10 billion if its importance was deemed in humanity’s interest? Could the U.S. then partner with other countries to share the costs of moving an innovation straight to generic with the world benefiting?

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