Who is Telling Your MS Story?

A lifelong history buff, I love reading and watching documentaries about the background and advancements of any field, be it science, medicine, politics, social justice, or the arts. One thing that’s changed for the good is that we no longer go to one authoritative source for information.

One thing in common

I grew up with volumes of ENCYCLOPEDIA BRITANNICA and a thick, heavy edition of WEBSTER’S DICTIONARY on our bookshelves. If I wanted to dig deeper, I would have to go the library and spend hours in the reference section and the AV room viewing microfiche. For current events, it was print media and network evening news. All these sources had one thing in common: they were mostly interpreted, written and delivered by middle-aged white men.

Protests to make voices heard

It took several civil rights movements to ultimately legitimize the personal experience narrative as a valued, reliable information source. Before that, little was recorded first-hand about the poor, the sick, and the dispossessed. Depression-era photojournalism brought Dust Bowl poverty into hard focus. Prior to that, illiterate immigrants’ stories were chronicled through the senses and pens of immigration intake and settlement house workers and were therefore biased. Protest has been the means by which a group makes its voices heard.

Medicine was paternally-driven as well

Most clinical trial subjects were white and male as were doctors and researchers. Twenty-five years after the World Wide Web opened up to us, blogs and disease forums serve as our info media, our pen and paper, and a marketplace for things and ideas. The internet holds our letters to loved ones, letters to the editors and the power brokers. Health system patient portals make easy access to our medical records, bills, and test results. But something has happened that is weird and frustrating.

Medical practices that poorly serve our needs

As patients with lifelong chronic conditions, our ability to learn from each other about our disease, its treatments, and outside-the-box therapies has put us ahead of an outdated, bogged down monolith of medical practices that poorly serve our needs. Integrative health care, a team-oriented approach that serves the individual’s particular situation, is still science fiction for most of us. Too many MS patients still complain that their neurologists are woefully ignorant about MS and are neglecting their care because of it. How many of you have a neuro that still insists MS doesn’t cause pain? How many of you have changed doctors only to have the new one walk back your MS diagnosis and deny you the DMD you’ve been taking for twenty years? Our only alternative is to fire the dumb doc and hire another, hoping they’ll be more on the ball.

Telling our own stories

More than ever before, patients are telling their own MS stories. We tell each other and we tell our medical professionals. Our stories are chronicled in Electronic Medical Records (EMRs), our blogs, and our social media posts. Social media is abuzz with our bios, our dates of onset and diagnosis. But look how long it has taken for the latest prevalence study to reflect a more accurate estimate of total MS cases in the US and the world. It’s jumped from 400,000 to one million in the US and 2.3 million worldwide.

Is MS still an orphan disease?

In light of this uptick, a woman recently asked me whether MS is still considered an orphan disease, treated with orphan drugs, and what difference it would make if any. I didn’t know, and a little research didn’t enlighten me. One source said orphan diseases are determined to have less than 200,000 people diagnosed, making medical research unprofitable. Another source claims there is no number that defines a disease as an orphan. Yet another source defines orphan drugs as something entirely separate. An already-existing drug, for example, that’s been taken off-label for years with voluminous anecdotal reports of improvement would never be FDA-approved to treat the disease because drug companies wouldn’t profit from it. But we know that’s not exactly true, either.

An old drug with a new name

Remember that old compounded drug called 4-AP, a.k.a. fampridine? For years, MS patients have sworn that it improves their walking. Then one day in 2013, the FDA announced approval of a drug called Ampyra that helps MS patients walk faster. It’s good old 4-AP with a brand new name and a Tier 4 designation, making it insanely expensive. Why did they deem this old compounded, doddering grandpa of a drug worthy of a clinical trial?

Maybe someone will tell the tale in their next MS story. Stay tuned, folks.

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