Disclosure: I own a fraction of a share of Eli Lilly stock.
We live in a very exciting time! Alzheimer’s medications that are more promising than past drugs are starting to hit the shelves, with others on the way. Eli Lilly’s new daratumumab medication has been suggested to slow the progression of early Alzheimer’s by up to 35%. So if it took someone five years to progress to more serious Alzheimer’s without medication, this could slow it, so it could instead take seven years, meaning more years being more present with one’s family. Lecanemab (Leqembi), from Eisei and Biogen, was also found to reduce cognitive decline, keeping our parents or ourselves fully present as we traverse life’s journey together!
In this article, I will talk about why these drugs offer society hope yet will also cause a big problem, at least in the short term (i.e., until generics become available when the drugs’ patents expire). As for my background, I earned my M.D. in the United States to soon earn my Ph.D. in Canada, focusing on Genetics. Today, I work as a postdoctoral scientist at Massachusetts General Hospital, studying the genetics of Alzheimer’s disease. In my medical training, I have seen the tragedy that can happen to people’s parents or themselves as they face newly diagnosed dementia and late-stage disease.
To be clear, these medications are a good thing. They could help many of those around us, whether a parent, sibling, or ourselves. Dementia is a horrible disease; until now, not much could be done about it. A family member is diagnosed with the disease in the office and told that they are showing signs of this illness and that very little can be done to help them. Over time, their personality changes, and they slowly become less like themselves daily, aware of what is happening.
This can cause significant distress for those with this illness and their family and friends. We spend years with these people. We are forced to watch, unable to make a difference, as they lose their ability to function and lose who they are. These medications could slow these changes, finally offering some semblance of hope for those with these diseases.
As with any medication, these drugs do not come without risks. One in four people who received Leqembi had a “transfusion reaction,” which in most people means that they may have had redness and swelling in the arm they received the medication. While such reactions can be severe, causing one’s airway to close up in an anaphylactic reaction, these responses are generally uncommon. Some individuals who received Leqembi or Donanemab experienced swelling in their brain, known as cerebral edema. While not necessarily a problem, in that it does not necessarily produce symptoms, one in four people who took Donanemab developed this swelling, one of four of which had symptoms. So if we considered a group of 1000 people who took this drug, using the study’s results, about 60 in 1000 could experience headaches or confusion. Some of these 60 individuals may develop bleeding in their brains. Around two could die from the swelling or bleeding. While concerning, 940 of these hypothetical 1000 people had no side effects. Even if you took this med and experienced side effects, you could be sure that your doctor would do everything they could to keep you safe, including discontinuing the medication that often resolves adverse effects.
So it sounds like my opinion is that these drugs sound promising. Why the doom and gloom article title? This is because these are or will be very expensive drugs. The price for a single person to receive enough Leqembi for a single year is forecasted to be $26,500. While Donanemab does not yet have an official cost, it is predicted to be over $26,000 annually. Think about that amount of money for a moment. The federal poverty line for a family of four, which could include a couple, a child, and a grandparent, is $30,000. More than one in 10 people in the United States are impoverished and struggling to make ends meet. This number is likely even higher, considering you do not have to be impoverished to have financial difficulty. What would happen if a couple’s loving grandmother or grandfather started showing signs of dementia?
While the elderly are entitled to Medicare, would Medicare cover such an expensive drug when it has to care for the entire country’s elderly population? Even if it pays for it, how much of it? After consulting physician colleagues of mine, we think it is unlikely that Medicare as is would pay this much. It would be great if they did, but there are likely not enough Medicare dollars to permit this.
Families could face impossible decisions or immense stress once these medications are more broadly available, and they have hope in front of them, yet this hope is financially inaccessible. While some private insurance may help pay for these cutting-edge treatments, perhaps with Medicare offering a small contribution, insurance is expensive, and we sadly do not all have health plans that enable us to not think about how we are going to make managing our health work, alongside taking care of supporting children, family, and parents.
There is also the concern that these medications may offer more benefit to those of certain ancestral groups, as reported by Reuters. This was not because the study’s designers or the company sought to exclude non-whites. For medical research to be approved, generally, one must communicate how the research will benefit a more diverse group. Describing how people are recruited into appropriately designed clinical trials and why medications may help people of European descent more than those of African descent is its own article, so I will not touch on this here. This is important because non-whites have higher rates of Alzheimer’s and have historically had less access to healthcare resources.
Such a financial predicament is not unique to these upcoming new medications (or healthcare in general in the United States). Research and development of new medications often cost over $2 billion when a new treatment is available for the general public. Companies need to give treatments a price that enables them to make up for what they spent and enable their other projects, which can also provide hope for better health management. While this approach is understandable (companies need to avoid going bankrupt. Even non-profits need to do that), it can still limit our access to treatments that could save or improve our lives.
The only fix that could address these issues is legislation, which the American Medical Association is consistently striving to improve people’s health in the United States, including driving healthcare reform and expanding (versus cutting) Medicare coverage. Your doctors are not just treating you in the office. They are going to Washington, D.C., and suffering the stresses of politics to improve your lives!
In conclusion, we have reasons to be optimistic about these new drugs. We are also facing the same problems that we have in the past, with promising treatments often being beyond the reach of those with less financial resources and those who have historically had limited access to treatments that could mitigate suffering.