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They forget who you are.
When a parent has Alzheimer’s disease, this is the hardest part. You remember so many details about growing up with them. But slowly they lose the memories of yesterday, then your childhood is erased from their minds, and finally your name does not elicit any recognition.
In my case, both parents were diagnosed with this terrible disease. I took care of my mother at home until she died, then I continued to take care of my father until his problems became so severe that he needed the 24 hour capacity to ‘a memory care unit. None of them lived long enough to see significant breakthroughs in Alzheimer’s disease. I am determined that the next generation will not say the same.
This is why I am adamant that policy makers at all levels reject proposals for government pricing 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 particularly harsh impacts on Alzheimer’s research.
One of the worst proposals is HR 3. Not only would this law allow the federal government to set prices for pharmaceutical therapies, it would do so based on international benchmarks.
You would swear that policymakers were addicted to this idea. The Obama administration has proposed an international benchmark. The Trump administration has got down to it. Now Congress has its own version. Each time, however, these pricing systems are rejected because they are incredibly harmful to innovation and patient access.
Hidden in HR 3, for example, are quality of life assessments. Unfortunately, other countries are less willing to pay for treatment for people who are sicker, older or whose life expectancy is expected to be shortened, often due to disabling conditions. These countries cap the price of therapies for these patients – and if we import their prices, we will also import their ageist and ableist discrimination.
In addition to denying some patients access to breakthrough therapies, the government’s downward pressure on prices would discourage innovation. Today, 70 percent of applied research on dementia is funded by pharmaceutical and biotechnology companies. If these private companies cannot get a reasonable return on the arduous research, testing and approval processes that go into bringing any new drug to market, they will not invest. If there is more downward pressure on the prices of therapies needed by older, sicker and disabled patients, they will lose the most.
A recent analysis from HR 3 confirms this, concluding that the bill, if passed, would reduce the chances of discovering new pharmaceuticals to treat Alzheimer’s disease by more than 80 percent. Research on other age-related, neurological and degenerative diseases would experience similar effects.
Prolonging the human tragedy of Alzheimer’s disease is unacceptable, but the economics do not add up either. The direct costs of Alzheimer’s disease exceed $ 300 billion and could reach over $ 1 trillion by 2050. These estimates exclude the burden of unpaid care.
The nation is now witnessing the consequences of imposing more care responsibilities on workers. Over the past year and a half, women have been disproportionately forced to quit their jobs when COVID-19 has moved homeschooling and in some cases has also eliminated adult child care centers and others. programs needed to help care for their parents. Do we really want to prepare our children for the same challenges as caregivers because we are not doing all we can to eradicate diseases like Alzheimer’s?
Americans know what is possible when we are trying to solve a problem. Our biopharmaceutical sector discovered, tested and deployed COVID-19 vaccines in record time, already saved hundreds of thousands of lives. What if we devote similar attention to Alzheimer’s disease, cancer, Parkinson’s disease, multiple sclerosis and other diseases?
We will only know if we avoid HR 3 and other government “negotiation†proposals and policies.
Keith Hughes is a resident of Las Vegas and Voters for cures lawyer.
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