Geezers with MS: Why We are Never Too Old to be Guinea Pigs

The medical establishment considers multiple sclerosis a young person’s disease. It generally becomes active between age 20 and 50, with more and more MS diagnoses conferred on children, adolescents, and adults over 50. As is the case with many other aspects of our culture, MS drug marketing and patient support programs mainly target twenty- and thirty-somethings.

In medical research, clinical trial subjects generally tend to skew younger than the age of 60. As they are in drug marketing and support apps, these tendencies are deliberate. There are several explanations for this that will be discussed below. But our focus on youth ignores one important fact. According to the World Health Organization (WHO), the fastest growing age group in societies the world over comprises people over the age of 60. What’s more, a far higher number of older people take prescription drugs than younger patients. A 2010 study published in the Am J Pub Health suggests that underrepresentation of the aging population in clinical research happens across disciplines. For example: “…Although two thirds of cancer patients are older than 65 years, only about 25% of cancer trial enrollees have attained this age.” According to the Alzheimer’s Association website, clinical trial participation of older adults is also low in research on Alzheimer’s disease despite the fact that out of the 5.4 million Americans with Alzheimer’s, an estimated 5.2 million people are age 65 and older.

Dr. Herrera’s 2010 study enumerates the reasons for this lack. “Typically,” Herrera writes, “older adults face a combination of obstacles, including comorbidities, economic constraints, underinsurance, lack of insurance, communication issues (e.g., hearing difficulties that interfere with telephone interviews and impaired vision that affects written surveys), and physical immobility that constrains transportation options.” In the end, researchers worry that the trial would be ruined by poor compliance caused by inconsistent attendance and cognitive dysfunction, among other difficulties.

In Europe, geriatricians—those specialists who diagnose and treat diseases of older adults—have taken up this challenge. Manfred Gogol, a geriatrician and former president of the German Society of Gerontology and Geriatrics, remarked that confusing regulations governing elderly trial participants discourages researchers from including them. Last year, the European Medicine Agency (EMA) created an initiative called Geriatric Road Map 2015, which “aims to put greater emphasis on involving more elderly patients in clinical trials.” Here in the US, the American Geriatrics Society also embraces the importance of including older adults in drug trials to ensure safety and effectiveness. Older people are at a higher risk of drug reactions, Dr. Herrera points out, because of the changes connected with aging. Their needs must be accommodated during a trial and that will take some thought and open-mindedness.

Trials for drugs that will be consumed mostly by older people must allow the elderly to safely and effectively participate. Since our bodies handle drugs differently at 65 than they do at 25, it makes little sense to test 25-year-olds to determine the safety and efficacy of a drug only their grandparents will take.

Though the majority of people with multiple sclerosis are under 40, they will age and live a normal or near normal life span. The research community would do well to make the adjustments necessary to integrate elderly people into clinical drug studies. Doing so will better inform a well-monitored integrated health care team and improve the odds that the patient will enjoy optimal benefits of her therapy.1-4

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. DiLorenzo T. “Aging with Multiple Sclerosis,” Clinical Bulletin, National Multiple Sclerosis Society, pub. April 2011. www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Clinical-Bulletin-Aging.pdf
  2. Herrera AP, Snipes SA, King DW, Torres-Vigil I, Goldberg DS, Weinberg AD “Disparate Inclusion of Older Adults in Clinical Trials: Priorities and Opportunities for Policy and Practice Change;” Am J Public Health., 2010 April; 100(Suppl 1): S105–S112.; doi: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2837461">www.ncbi.nlm.nih.gov/pmc/articles/PMC2837461. Also pub. On website NIH (National Institutes of Health) NCBI (National Center for Biotechnology Information).
  3. “The mismatch between the health research and development (R&D) that is needed and the R&D that is undertaken: An overview of the problem, the causes, and solutions;” Published online 2013 Oct 10. doi: http://www.ncbi.nlm.nih.gov/pubmed/?term=Viergever%20RF%5Bauth%5D. 2016 ALZHEIMER'S DISEASE FACTS AND FIGURES. www.alz.org
  4. American Geriatrics Society, Public Policy, Underrepresentation of Older Adults in Trials. http://www.americangeriatrics.org/advocacy_public_policy/research/

Comments

View Comments (6)
  • Peg
    2 years ago

    Thanks for this article. I’m one of these “geezers”, and I agree wholeheartedly. I was diagnosed in 1974, and am now 65. Recently diagnosed with secondary MS, I would love to participate in research studies. Since I cannot walk, and am 65, I don’t qualify. I just assumed there are no studies being developed for people like me.

  • DonnaFA moderator
    2 years ago

    Hi Peg, we’re so glad that you enjoyed the article and found it useful. Sending good wishes that you find a fit! Thanks for being part of the community. -All Best, Donna (MultipleSclerosis.net team)

  • Paul in Bay Ridge
    2 years ago

    Kim, I enjoyed the article. I’m a little surprised to hear that most MS patients are under age 40, the several people I know with it are all in their 50’s or up, with only 1 around 25 years old.
    Regarding drug and other trials, where the relief is needed is certainly in the older age groups, but I suspect the drug companies are trying to treat at the earlier ages where there is less damage present and hope that ‘younger’ heals or responds better than ‘older’. There may also be questions about treating someone who has been on long term medications already – do they stop the meds to take the trial drug? Would there be drug interactions between the new drug and ‘R’ or ‘N’, etc.? With the recent passing of legislation, hopefully there will be a shot in the arm for more research and better knowledge of the extent and demographics of those with MS and other afflictions.

  • Cathy Chester moderator
    2 years ago

    Excellent as always, Kim. I’ve wanted to write more about aging and adults. And this conversation about clinical trials in the elderly population is so necessary.

    I wish your piece could find its way toward researchers and big pharma for them hear the important points you are making! Kudos on this piece.

  • Monk
    2 years ago

    Interesting article. Do researcher give any insight why older and younger people are getting MS?

  • Kim Dolce moderator author
    2 years ago

    Hi Christine.3,

    Right now there is no evidence that MS is seeing an increase in these non-traditional groups. Diagnostic techniques have greatly improved, making it easier to confer an MS diagnosis in general. Diagnostic tools such as MRIs were unavailable to older people when they were young. This might be one reason their diagnoses were made later in life.

    If it seems that more children are being diagnosed with MS, it’s more likely that these improved diagnostic tools are making it possible to diagnosis MS earlier than ever before. That’s the thinking in the medical community thus far. Thanks for your question.

    Kim

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