Ageism in Clinical Trials and Healthcare
The idea, they say, is to keep having birthdays, and I agree.
I see aging as a precious gift, and when you live with multiple sclerosis (MS), that gift is even more golden with each passing year. We earn every wrinkle, gain new experiences, and accumulate important pieces of knowledge. We also learn to make wiser decisions than we did in the past.
There’s exquisite beauty in aging, and it’s something to be grateful for. So why are we sometimes the invisible demographic?
I was so astonished that people complain about getting older that I wrote a piece for HuffPost about turning 55. I talked about embracing age and seeing it as a chance to live the kind of life that matters to you, no matter your abilities.
After all, what’s the alternative?
I can talk about age until I’m blue in the face, but the fact is that ageism exists. I know that’s not shocking news, but it’s still upsetting when ageism crops up in healthcare.
I’ve been turned down for a number of health-related initiatives because of my age. I’ve read plenty about age discrimination when it comes to qualifying for clinical trials, pharmaceutical initiatives, studies, and surveys. Each has different requirements, but often the age limit is under 55.
A New York Times article titled “The Clinical Trial is Open. The Elderly Need Not Apply” confirmed my suspicions about age discrimination in healthcare. Older age groups, the ones who would benefit the most from various studies, are shut out of trials. This is counterintuitive and shortsighted. How can doctors properly care for older patients when there’s no evidence on which to base advice? According to the article, “Too often, doctors resort to extrapolation — or, to put it less politely, guessing.”
In other words, they base their advice on findings from a younger demographic.
I recently listened to a discussion about doctors not recommending disease-modifying therapy (DMT) for older patients. Some studies also concluded that discontinuation of therapy for older people wasn’t harmful. In fact, continuing therapy could increase the risk of infection and side effects in the elderly. That said, according to a Medscape article titled, “Safe to Stop MS Disease-Modifying Therapy After Age 60?” further studies on this topic are needed. Le Hanh Hua, MD, a neurologist at the Cleveland Clinic Lou Ruvo Center for Brain Health, said, “The controversy about stopping DMT after a certain age may not be resolved until more evidence emerges.”
As MS patients know, we are not one-size-fits-all. Our uniqueness doesn’t stop when we reach the age of 55. Older patients have their own needs, and staying on medication may be one of them. The benefits of DMT might diminish with age. There could be different risks for older patients, and cost may be a factor if insurance coverage stops or changes. However, in my opinion, one set of rules should never apply to all patients.
We are still unique. We still matter. We still deserve to participate in clinical trials, initiatives, studies, and surveys. The older patient’s entire medical history must be carefully scrutinized before drawing any conclusions about their physical and emotional needs.
Ageism in healthcare should never be welcome.
***
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Comments
Christine Paul
The theory is that the immune system slows down as we age and therefore so does MS progression. From my personal experience, this is not so. For me, at least. I had a severe exacerbation during my washout period from Gilenya on my way to Ocrevus when I was 63. I had another one the week before my 64th birthday. I was still between DMTs but after that one, my doctor worked with my insurance company to get me on Ocrevus ASAP. I haven’t had another relapse since. I’ll be 65 next month.
My neurologist’s opinion is that my disease is highly active, despite my age. Someone should do some research before they draw conclusions. I’ve yet to see an actual study with results supporting the conclusion that MS exacerbation slow down with age. And at what age to expect this.
Or is the opinion based on the fact that we over 60 have already lived most of our productive life and treatments for MS should be focused on the young? Hope not. I’m still active in my community, have an active social life and have the resources and time to devote to charities and community activities. In other words, I’m still an active participant in this life and plan to remain so as long as MS can be held at bay. And I’d like to think research plans to support us older MS patients.
Carol Pratt
it's like on your 55 or 60th birthday you're CURED! and don't need any med anymore.
I wish.
janet perry
I had a neurologist who wanted me to stop Glatopa when I turned 60. Godd thing he left because I had an exacerbation that left me hospitalized at 61. Now at 62, my neurologist wanted to get me in clinical trial her MS Center was doing, but the age cut-off was 60. We went ahead with Ocrevus (the trial) anyway & I feel confident while I;m not in the trial, she'll let the researchers know about my progress.
Jeff
Being another long term MSer (DXed 1977) I know the frustration of the lack of drugs. I am now solidly in the SPMS phase. I had been in several studies until I passed that golden age of sixty five. I had to insist my Neuro put me on Ocrevus, even though it isn't specifically tested or approved for me. I feel it has made a significant difference, and he agrees.
But you seem to forget that this is a business, after all. To get FDA approval for any drug the companies must go through rigorous clinical testing, which costs millions of dollars; and with no guarantee of a payback. In testing they must include all possible variables, including age (your primary complaint), other drugs taken, other health conditions (which those of our advancing years are racking up at a rapid rate), and the most important: The probability of a successful outcome.
Unfortunately, the older we get the lower that probability is. The MRI's of my CNS lesions are stuff that Medical Books clamor for; they're really nasty! Why would they spend money testing on me? It's not ageism, it's business.
So unless a company is developing drugs for patients specifically like us, their monies are better spent where there is a higher probability, more profitable chance of a successful outcome. I want every company to stop what they are doing and develop drugs specifically for you and I and the many like us. But the reality is that we're just not the most profitable segment.
Perhaps, after developing so many RRMS drugs, they will concentrate on us Progressives. We, being older, will then be much in demand for the tests. It will take time. If by then it's too late for us, perhaps it will help those soon joining us.
Cathy Chester
Thank you for reading my piece and commenting on it, Jeff. I appreciate the thoughts you shared and you certainly are correct on many points. Except one.
I never forget that the bottom line for pharmaceutical companies is business and profit. As a certified advocate and longtime patient, I fully realize what is involved in getting a drug approved. Pragmatically that's what we're up against.
I don't know how the tides can change but I do know that I won't remain silent about this issue. Doctors should also speak up for the needs and rights of the older patient. Will the latter happen? Probably not. But I live with the hope there will be more and more startups (and there are some sprouting up) who consider the needs of patients more heavily than others. We may not see the tide change in our lifetime but I hold onto the dream that the next generation will be around to see it happen.
W
Thank you for writing this important piece. As an older patient, I do think about the risks of seeking to constantly lower my immune system with meds. My physician is well-trained, but there is very little reliable data out there about possibly discontinuing treatment. That said, of course I wouldn't want anyone to be "phased out" of treatment for any reason. It's individual, as you said.
Angela Stogner
Great piece. Add the government to the culprit list. I’m 66 and will soon retire. I will be on Medicare which means the patient assistance I receive now that covers my meds will not be available to me and I haven’t found any alternative. Any advice?
Artanis
You might want to take a look at this then. There is a study going on right this minute about discontinuing MS meds after age 55. It is ongoing until 2021, as I recall. I tried to get in but washed out on the inclusion criteria.
Oh, and there is also a video if you scroll down on the page, interviewing the doctor who is doing the research. Good stuff. Maybe we'll get some more data on stopping meds soon.
https://www.pcori.org/research-results/2015/can-people-later-stages-ms-stop-taking-disease-modifying-therapies-disco-ms
W
Thank you, Artanis! This is very interesting.
Jeanette E Trinity
I was diagnosed at age 69 after 8 months of 5 doctors. The first 4 doctors through all my problems were age related until my 5th doctor within 5 minutes knew that I had MS. I've had relapses.