Category Archives: patient centered healthcare

Doctor choice, education, expectations, healthcare information, hiding symptoms, innovation, Innovation in Health Professional Education, introspection, kid's medicine, learned social interaction, life with MS, Multiple Sclerosis, patient centered healthcare, patient choice, trust

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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healthcare information, Medical bills, MS treatment, patient centered healthcare, patient choice, scary questions, sickville, value of treating MS

Everyone Acts For Themselves

Everyone wants more.
Everyone wants more.

Free market theory assumes all actors work with an enlightened self interest, meaning every one will do what benefits them most. When it comes to health care, I have long maintained we as patients lack the needed knowledge to act in our best interests. As I said in my last post, we have trouble picking our best source of medical care. Unfortunately, that problem only covers one part of our system’s failing. Let’s imagine four decision points where all of our actors behave as theory would have us believe, in their best interests.

Imagine for a second three stakeholders with a newly approved drug. The first is the drug company which has spent millions of dollars developing a new treatment which seems to meet an unfilled need of our second actor, the patient. The pharmaceutical company knows the need of the patient and has invested heavily over a period measured in years to bring this new drug to the patient, and they want to maximize return on their investment. Since many of these investment fail to bear fruit, the costs to the pharmaceutical is huge, and they have to pass the costs along in order to stay in business and gain investors. The cost to the patient starts extremely high. Let’s call this Decision A when a patient goes to their insurance company as says “I need insurance to cover this.”

The patient has purchased insurance from our third actor the insurance company. The insurance company has thousands of patients who could benefit from this drug. As a result of this purchasing power, they have some bargaining power. However, the pharmaceutical company knows patients’ desire for the drug is strong enough to push patients to pick the insurance company which will cover their treatments. The result is our third actor does not have the needed bargaining power to force the pharmaceutical company to lower costs overly much.

So what does the insurance company do faced with a choice of losing customers or losing money due to high costs of the new medications? They do one of the only things they can do. They attempt to influence the patients to pick cheaper medications by making patients pay more. In effect, they lessen the amount covered for these “specialty drugs.” The logic is if patients have more of a financial stake, their decisions will differ. So the insurance company raises the patient copays. Let us call this Decision B.
Our first stakeholder sees this happening too. What can they do to make sure patients can afford their drug? The smart companies identify the patients most likely to be sensitive to price and tailors programs to keep them buying the product. I suspect this is the beginning of the “copay assistance plans” many pharmaceutical companies have for their expensive drugs. Think of this as a sale for which patients must apply, and the pharmaceutical company generates good will for giving away their product at a “discount.” Let us call this Decision C to offer copay assistance.

If our story ended here, maybe it would be sustainable, but it does not. The nature of insurance in the U.S. is to have a maximum amount patients are forced to pay. After all, that is why we have health insurance, to keep health events or conditions from wiping us out. What happens when the pharmaceutical costs are so high the maximum out of pocket is reached? Suddenly, the insurance companies’ tool to contain costs disappears completely. Now the pharmaceutical company can raise rates again because the copay assistance no longer lowers their profit as all costs are being born by the insurance company again. Once the pharmaceutical company realizes there is a maximum they will have to help pay, they can make sure the cost of paying the insurance copays is included the price they charge. In effect, the insurance company is paying its own copays. Let us call this Decision D when pharmaceutical companies add the copays back into the cost of the drug.

At each of these four decisions A-D, our actors made decisions in their best interests. At decision point A, the pharmaceuticals brought a drug to market and began by pricing their drug at what the market would bare. The patients who wanted the drug could not afford it, but they had insurance which covered it. As more patients with insurance wanted the drug, the insurance company had to change things or loose too much money. The copay rise is decision B. The pharmaceutical companies realized the insurance companies would drive customers away from their product unless something was done to keep the costs from adversely impacting patients . This brings us to decision C, the copay assistance. When the pharmaceutical company realized there was no longer a constraint because patients were no longer paying the copay, the pharmaceutical companies realize they can make back their copay assistance from decision C. At this point, there is no longer a downward pressure on price which leads us back to decision point B except prices are higher this go round, and copays are no longer an effective tool to contain costs.

Wall Street Journal: Health Insurers Discriminate Against Patients Who Need Specialty Drugs

While many may read the article in the Wall Street Journal as a terrible injustice insurance companies are inflicting upon us in the land of sickville, I look at it as a predictable decision point. The article describes decision point B. I have benefited from decision point C, and I know many other patients have as well. At some point in the near future, I predict we will complete the cycle. I know the drug I take for MS still costs 70-90K a year, and the price has not dropped significantly in the 8 years I have taken it. I attribute some of this to decision point D, but I have to admit I have not looked too closely at the marginal costs of the drug maker to make another dose for me or the time frame they need to recoup their investment costs. It has never been in my interest as a patient to care overly much when I pay so little. As more patients, pharmaceutical companies, and insurance companies continue to act in their own interests, how long can our free market continue to function without collapse?

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