Taking a Broader View

Last week, I discussed a specific example of discrimination currently happening in the health care world. It’s heart breaking and not rooted in compassion. A friend reached out to ask more questions about the situation, and her questions led me to realize that I left out a major piece of this particular equation and the way decisions are made in our health care system. By preventing people with Down Syndrome from participating in the CED process for the new Alzheimer’s medication, research for its use in people with Down Syndrome will not exist. CED is a research process that provides medications to people who need them as a way to get more nuanced information about ned medications. Exclusion from the process leads to exclusion from the available medical research. So looking ahead, insurance companies will be able to deny coverage of this medication by stating that there is no research indicating its effectiveness in people with Down Syndrome. By excluding a population with a 90% risk of developing Alzheimer’s disease, it’s practically guaranteed that no one will have to cover their otherwise certain medication usage in the future.

Drug manufacturers do not want to deny anyone participation in research, because they function to sell medications. More people qualified to take a medication equates to bigger profits for their company. Physicians don’t generally want to deny patients access to a treatment that could improve their quality of life and health outcomes. Patients definitely want access to the best, newest treatments – for themselves and for their family members. So, in the face of all these stakeholders who seem to want the same thing – more access for the most people – decisions like CMS’s to exclude people with Down Syndrome and other IDD from the most recent CED seem counterintuitive. As I discussed in my previous post, their exclusion speaks volumes about ethical decision-making and prevalent beliefs about whose lives are valued. However, the financial implications of this decision warrant discussion.

Insurance companies stay afloat by charging more money in premiums than they pay out in benefits. This is a little simplified, but it’s basically how the system works. They hope to insure more healthy people than unhealthy, and to pay for inexpensive treatments over expensive ones if possible. Centers for Medicare and Medicaid Services (CMS) doesn’t have to make a profit the way private insurance companies do, but they do have to remain solvent. By denying treatment access to a large group of people who will certainly require that treatment, CMS stands to save a lot of money. It’s a good gamble for them, because discriminating against a marginalized group doesn’t attract the same kind of bad press as discriminating against a more traditionally valued group of people. Because most private insurances follow CMS’s lead about what treatments to cover, their sanctioned discrimination sets the precedent for further discrimination.

Last year, United Health, which includes United Healthcare insurance, reported profits of $287 billion[1]. They are expecting $317-320 billion in profits for 2022[1]. This is great news for shareholders, but it feels questionable for health care providers – especially those who have had to obtain prior authorizations before providing treatment, or who have to get ongoing authorization. When I worked inpatient, it was not uncommon that I might be required to call an insurance company every 4-5 days to report on a patient’s progress and answer questions, justifying why the patient needed to stay for more therapy (expensive) vs. going home for home health (hugely less expensive). I’m sure people who make these phone calls are required to follow a script, but their questions felt absurd. I would report, “The patient continues to require 2 person assist to roll over or sit on the edge of the bed. But she doesn’t pass out when she sits anymore, and she is able to stay in a chair for 4 hours. She is making good progress but requires more therapy before she can return home safely.” Inevitably, the insurance representative would ask, “But have you tried stairs with her yet?”

Sometimes insurance companies decline to cover treatments that they deem to be unnecessary. Unbeknownst to many patients, an appeals process does exist, through which patients can dispute these decisions. It is typically a 6 step process, with over 90% of denials overturned by step 3. The process requires time, agency, and health literacy, never mind the ability to pay the denied charges while the appeals process is ongoing. Most people are unable to complete the appeal process due to lack of information, lack of time, lack of finances, or perceived inability to change the situation. Other times, insurance companies require a “peer to peer” conversation to occur before agreeing to cover a particular treatment. This often involves one clinician on the phone with someone who shares their level of education but not their clinical experience. My husband, a pediatrician who specializes in bleeding and clotting disorders, often finds himself on the phone justifying his treatment decisions to physicians who used to practice adult OBGYN…not exactly a peer, or even a person well qualified to understand his prescriptive decision making.

It’s a bizarre system, but it’s the system that our country actively chooses for health care decision-making. And so, when strange policies come out that seem not to be in the patient’s best interest, it’s often helpful to follow the money trail, as well as to consult with the 3 beliefs required for compassionate action. Sometimes, as in the case of the Alzheimer’s medication, pre-existing biases against a population can lead to financial gain for policy makers. This payment system, which actually functions to determine which treatments patients are able to access, places corporate financial gain ahead of the patient's best interest. The ongoing fight by providers on behalf of their patients is exhausting, and plays a large role in provider burnout.

[1] https://www.forbes.com/sites/brucejapsen/2021/11/29/unitedhealth-group-to-eclipse-300-billion-in-revenue-next-year/?sh=33cdab343d70