Ageism in Clinical Trials and Healthcare

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.

it's like on your 55 or 60th birthday you're CURED! and don't need any med anymore.
I wish.

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.

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.

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.

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?

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

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.