A Cure, New Treatments and Putting Them All on a Faster Track
If there were two words I’d want as answers in a crossword puzzle they’d be "cure" and "remyelination". Every time I think of them they make my heart flutter.
If you’re reading this article I doubt I need to explain why.
When I was diagnosed thirty years ago my parents insisted on getting a second opinion. Smart advocates. They brought me to a top-notch doctor in Manhattan who had a genteel manner and kind eyes. Although he confirmed that I had MS he went on to say there’d probably be a cure within five years.
Ahem. Just clearing my throat while you re-read that last sentence.
As we all know that never happened. But in lieu of a cure I’ve witnessed countless miracles - well to me they’re miracles. To be told to go home and wait for an exacerbation is a dark and frightening feeling. You feel like you’re living in a new black hole, one you’ll never crawl out of. Now, to have choices to help you feel better? That’s a miracle.
After my diagnosis I kept thinking to myself that if you have a headache you take an aspirin. If you have strep throat you take antibiotics. But if your legs buckle under or your vision disappears, or you can’t get out of bed because you’re too damn tired, there were no guarantees that steroids would restore you to normal.
For us there was nothing to help.
That’s where the miracles began. I prayed a long time for a drug to come along to help me in my struggles against MS. When Betaseron and Avonex were approved I was ecstatic. Unfortunately I suffered with side effects but they were helping others, and I was glad. Then Copaxone came along. Bingo.
Since then I’ve seen a proliferation of FDA approved drugs that help people live a better quality of life. To me, that’s a miracle.
There are several drugs that modify the disease course. There’s also a new drug, Iibudilast, (MedicNova, Inc.) that was recently designated as a Fast Track product by the FDA for progressive forms of MS. Ocrelizumab, under clinical investigation for PPMS, was granted "Breakthrough Therapy Designation" for MS. And an epilepsy pill may protect against nerve damage in the eye and potentially slow the accumulation of disability.
And then there’s stem cells, something I’ve had my eye on for awhile. If I had to bet on what I think will be the most important treatment for us this would be it. Of course this is my own, non-medical opinion. Only time will tell.
For now there’s a lot of excitement surrounding HSCT (autologous haematopoietic stem cell transplant) that attempts to reboot the immune system by using a person’s own bone marrow and blood and has the potential to reverse disability. And there’s mesenchymal stem cells, oligodendrocyte precursor cells (OPCs), induced pluripotent stem cells (IPCs), and embryonic stem cells for more progressive types of MS that are now being studied.
(NOTE: The National Multiple Sclerosis Society is currently supporting 12 research projects exploring various types of stem cells, including cells derived from bone marrow, fat and skin, and has supported 68 stem cell studies over the past 10 years.)
This is a small sampling of the drugs and treatments that are either available now or are on the horizon. They’re not cures but they are here to help us in ways that weren’t available 30 years ago when I was diagnosed.
Rejoice. We now have choices.
Then there’s remyelination, or the regeneration of the myelin sheath. A pretty neat trick, don’t you think? For something to REPAIR our lost myelin? Hallelujah.
For example, according to Multiple Sclerosis News Today “Neuregulin-1 is a signaling molecule of interest in the context of synaptic plasticity — the ability of our nerve cells to form new connections and get rid of those that are no longer needed. Now, a study showed that the factor is also indispensable for repairing myelin in models of spinal cord injury, a finding with possibly long-reaching implications for multiple sclerosis (MS) treatment.”
And then there’s Anti-LINGO I, with reported results of repairing damage caused by optic neuritis.
To me this sounds like science fiction or, at a child’s level, something right out of The Jetsons. And aren’t we the lucky recipients of all that research?
I was thrilled to read about a new piece of legislation, the REGROW Act, that was introduced by U.S. Senators Mark Kirk (R-Ill), Joe Manchin (D-W.Va.) and Susan Collins (R-Maine). The Act seeks to “reduce barriers to medical innovation and accelerate the development of new regenerative medicine treatments, which have the potential to restore or establish normal function in damaged human cells, tissues and organs.”
This piece of legislation is exciting for every patient waiting for news about finding cures and treatments that will allow them to live the life they want on their own terms.
Yes, to me these are still miracles. I’ll keep a good thought about finding cures. But, in the meantime, I’ll continue to be amazed at what science, human ingenuity and hope can do for countless lives.
How many specialists did you see before finding "The One"?