Alzheimer’s discrimination continues in more ways than one

People with serious illnesses or loved ones dealing with life-threatening diseases place a lot of their hope in what is commonly referred to as the drug development pipeline. We cling to faith that this pipeline will deliver medications and technologies that can extend and strengthen lives. And politicians play to this hope — promising healthcare reforms to help millions of patients. But this hope is moot if access to those new innovations is limited.

For people with Alzheimer's disease, the latest science demonstrates significant promise in addressing the disease in its early stages, a critical development for patients who are struggling with an illness that has limited early diagnosis and treatment options. Unfortunately, Alzheimer's patients are not only fighting a fatal condition but also several regulatory barriers that are stacked against them. Put simply, the Alzheimer's community — whether due to misunderstandings about the nature of the disease or presumed costs associated with it — are victims of systemic discrimination.

The most recent example involves an unnecessarily cruel decision by the Centers for Medicare and Medicaid Services that severely restricts patient access to current and future treatments. Despite several stakeholders weighing in and approval by the Food and Drug Administration on a new Alzheimer's treatment, CMS refused to reconsider national coverage determination, effectively limiting access.

Sadly, this decision fits into a pattern we've seen with Alzheimer's. It's a disease that is not treated with the seriousness that other illnesses receive. If this was a breakthrough cancer treatment, it's safe to assume that external pressure to ensure patient access would be significant. Too many outside the Alzheimer's community think this disease is simply part of the aging process, that it isn't fatal, and that patient care does not require a tremendous amount of time and resources. Not only is this false, but it's also insulting to those battling Alzheimer's from the earliest signs of the disease and those who devote their lives to care for them. Imagine telling someone with stage 1 cancer that they should wait until things get worse before they can access treatments. This thinking goes against everything new medications and technologies are designed to do.

There is no better time than now to encourage policymakers to focus on Alzheimer's — when more than 6 million Americans are living with the disease and this number is projected to rise to nearly 13 million by 2050. If policymakers are sincere about correcting health inequities, then the disproportionate effect of Alzheimer's on minority populations is a relevant concern. The millions of Black and Brown Americans disproportionately affected by Alzheimer's and dementia — both those with the disease and their caregivers — need to be represented in research, clinical trials, and development along with culturally competent support, education and dissemination before we can even start to close those health inequities.

Individuals of Hispanic heritage are one and a half times more likely than whites, and Black Americans are two times more likely than non-Hispanic whites, to have Alzheimer's and other types of dementia. In fact, by 2030, nearly 40 percent of all Americans living with Alzheimer's will be Black or Latinx. African-American and Latino families are carrying an economic burden of billions of dollars annually for medical, caregiving and long-term care costs associated with Alzheimer's. At the same time, our healthcare system strives to reduce its costs by limiting access to new treatments.

These disparities are locked in place as long as access to breakthrough treatments is limited to those in approved clinical trials or those who are willing and able to pay out-of-pocket.

Yes, billions of dollars in investment resources and scientific brainpower to improve the futures of those with Alzheimer's are still pouring in, but healthcare policymakers have squeezed the other end of this so-called pipeline so that what should be a robust flow of accessible innovation is just a trickle. Financial priorities continue to crowd out the opportunity to mitigate the risk of death and decline.

If policymakers at CMS are to live up to their rhetoric about eliminating health disparities and achieving health equity, they must ensure access to approved treatments. They must put a stop to the discrimination against a group of people who are already suffering. They must help to protect this nation's citizens against the risk of death, disability and debilitating illness.

We have the capacity today to change health outcomes for millions of Alzheimer's patients for the better, so why aren't we?

Marvell Adams Jr. is the chief executive officer of the Caregiver Action Network. He wrote this for InsideSources.com.