Medicare dug its heels in last week, promising to restrict accessto new Alzheimer’s treatments even if they receive traditional FDA approval. This is an unprecedented and comes ahead of an FDA advisory committee meeting this week about Leqembi, a new drug expected to receive approval on July 6.Writing in FoxNews, Bill Collier puts the decision into context with a heart-wrenching account of his wife’s battle with Alzheimer’s disease at 55. Bill articulates the challenges of getting a diagnosis and treatment, an ordeal many people are going through right now.
Early onset Alzheimer’s is rare. Only about 5% of cases start in middle-age. But Dora was one of them, and it destroyed our world. I incrementally lost the love of my life, the mother of my children, my best friend. I lost the center of my life’s story, a story that I can’t ever tell again.
Millions of Americans are going through this ordeal in some form right now. The difference today is there are treatments that could slow the progression of disease by as much as 18 months, but Medicare is withholding coverage.
I don’t know if these drugs would have helped Dora slow the progression if they were available back then. But I know that because we weren’t taken seriously and didn’t get an early diagnosis, Dora never got that chance.
Every day, hundreds or even thousands of people slip past a stage where such treatments might help. This to me is a tragedy, for Dora, and for many other sufferers and their families.
…A lot has changed since 2015. Back then, we struggled to get a diagnosis. We even faced harassment from the clinical community, as we ran up enormous hospital bills going from one specialist to the next looking for answers.
Even when we got those answers, there were meager options for treatment. All we could do was to cling to the remaining months of life that Dora would be able to meaningfully enjoy.
Today, advances in diagnostics and greater clinical consciousness mean fewer families will face the rejection we encountered when we sought Dora’s diagnosis. PET scans are helping doctors confirm a diagnosis of early onset Alzheimer’s, and new treatments show hope of slowing disease.
Some say these new treatments, despite being FDA-approved, are somehow unproven or too expensive, especially for programs like Medicare or disability. But our social safety net is mandatory. We are all taxed to pay for it, and it is based on the promise that if you need help, it will be there.
Expensive or not, the social compact that drives these programs isn’t conditioned on cost. Indeed, the whole concept of mandatory contributions to government health programs is that when something catastrophic happens that would be way too much for an individual to bear, these programs will help you.
Should people like my wife be allowed to slip into a state where their care is more expensive than the treatment that might have kept them at home, more independent? How long will it be before we break this vicious cycle? How long until cases are identified early, more disease-modifying treatments are found, and patients can easily access the promise of keeping a family’s stories alive?
Let’s hope Medicare does the right thing by increasing the availability of treatments that could make a meaningful difference for many people and their families suffering through this disease.
Life is about seasons. What I would give to have one more with my Dora. Not the ghost of who she is now, but the angel I fell in love with.
You can read the full piece here.