Alzheimer’s patients deserve treatment and innovation, too

They forget who you are.

When a parent has Alzheimer’s, that’s the toughest part. You remember so many details about growing up with them. But slowly they lose memories of yesterday, then your childhood is erased from their minds, and eventually your name sparks no recognition.

In my case, both parents were diagnosed with this terrible disease. I cared for my mother at home until her death and then continued to care for my father until his issues became so severe, he needed the around-the-clock capabilities of a memory care unit. Neither of them lived long enough to see significant treatment advances against Alzheimer’s. I am determined the next generation will not say the same.

That’s why I’m adamant that policymakers at all levels reject proposals for government price-setting or government “negotiation” on pharmaceuticals. These plans, which would put bureaucrats more in control of health care than they already are, would almost immediately curtail the development of many new treatments and cures, with especially harsh impacts on Alzheimer’s research.

One of the worst proposals is HR 3. Not only would this legislation allow the federal government to set prices on pharmaceutical therapies, it would do so based on international benchmarks.

You’d swear policymakers were addicted to this idea. The Obama administration proposed an international benchmark. The Trump administration gave it a go. Now Congress has its own version. Every time, however, these pricing schemes are rejected because they are incredibly harmful to innovation and patient access.

Hidden in HR 3, for instance, are quality of life assessments. Sadly, other countries are less willing to pay for treatments for people who are sicker, older, or expected to have shortened lifespans, often due to disabling conditions. These nations put a ceiling on the price of therapies for these patients—and if we import their prices, we will import their ageist, ableist discrimination as well.

In addition to denying some patients access to breakthrough therapies, downward price pressure from government would deter innovation. Today, 70 percent of applied research on dementia is funded by pharmaceutical and biotech companies. If these private enterprises cannot earn a reasonable return on the arduous research, testing, and approval processes that go into the release of any new medication, they won’t invest. If there’s more downward pressure on prices for therapies needed by older, sicker, and disabled patients, they will lose the most.

A recent analysis of HR 3 bears this out, finding that the bill, if enacted, would reduce the chances of discovering new pharmaceuticals to treat Alzheimer’s by more than 80 percent. Research into other age-related, neurological, and degenerative conditions would suffer similar effects.

To prolong the human tragedy of Alzheimer’s is unconscionable, but the economics don’t add up either. The direct costs of Alzheimer’s exceed $300 billion and could rise to over $1 trillion by 2050. These estimates exclude the burden of unpaid caregiving.

The nation is right now witnessing the consequences of foisting more care responsibilities on workers. Over the past year and a half, women were disproportionately forced to leave their jobs when COVID-19 moved schooling into the home and, in some cases, also eliminated adult daycare and other programs needed to help care for their parents. Do we really want to set up our children for the same caregiver challenges because we don’t do our utmost to eradicate diseases like Alzheimer’s?

Americans know what’s possible when we put our minds to solving a problem. Our biopharmaceutical sector discovered, tested, and rolled out COVID-19 vaccines in record time, already saving hundreds of thousands of lives. What would happen if we devoted similar attention to Alzheimer’s, cancer, Parkinson’s, multiple sclerosis, and other conditions?

We’ll only find out if we avoid HR 3 and other bad government “negotiation” proposals and policies.

Keith Hughes is a Las Vegas resident and Voters for Cures advocate.