CHARLOTTE, NC, May 7, 2017 – One thing about ALS, for the moment it is the world’s biggest roller coaster ride. Four of the five days of last week were spent at one facility or another that is increasingly focusing on research of the disease.
I was scheduled for an appointment in Salisbury, NC on Wednesday to undergo another round of interviews with a military ALS team similar to the one in my hometown. The Charlotte team conducts ongoing research.
The interviews in Salisbury were similar but the military meetings were less detailed and, therefore, not as stressful. That said, it was the second time I have met with veteran’s personnel who have informed me that I am only the second patient they have encountered with ALS. That tells me the military is making progress, but it is only now beginning to recognize that ALS is a life-ending condition that may, in the long run, be more serious than some of the other illnesses that have been treated in the past.
The good news is awareness. The not-so-good news is that it is likely too early in the process to make any significant difference in my overall diagnosis.
Starting Monday, I begin treatment in a seven-month study which tests a new drug for ALS treatment. As my doctor explained, if I understand correctly, testing is being done in a sort of scatter-gun method. The doctor probably would not like that description, but basically they are shooting a lot of arrows at a target and trying to find one or two that hit the bullseye.
From that point, they begin using the new knowledge to delve further into associated possibilities to see if they can discover better results. For the moment, the only drug currently approved by the F.D.A. to treat ALS is Riluzole. Doctors say that riluzole can increase survival rates by two to four months, which doesn’t sound like much but, at least, it’s a start…a ray of light at the end of along dark tunnel.
As of Friday, the F.D.A. has given its blessing to a second drug called Radicava or edaravone, another medication that has been shown to slow the progression of ALS.
According to the doctor who is treating my condition, when the F.D.A. announces the approval of a new drug, “you can be sure researchers have known about it for three to five years.” Which means the medical community is already at the cutting edge of the research.
Radicava was developed as part of a six-month study in Japan. Patients were tested intravenously for six months with treatments requiring a one-hour infusion every day for 14-days, followed by 14 days off. After phase one, patients received daily injections for 10 out of 14 days with 14 days off. Of the 137 test patients, half were given Radicava while the others received a placebo.
The study in Charlotte follows a similar testing schedule with infusions for five consecutive days followed by six months of three injections during a one week period. I have not been told whether this is part of the Radicava study or something new, however, I do sense that my doctor has positive feelings about the progress that is being in this particular study.
Part of the previous ordeal which I went through with the ALS clinic was an effort to be approved for the study. If certain conditions prevail, they can render a patient ineligible.
According to the F.D.A., Radicava does not make patients feel better or stronger, nor does it improve symptoms. What it does do is slow the progression of the disease even though it may be imperceptible to the patient.
Additional roadblocks may include bruising from the infusions, hives, swelling, shortness of breath and allergic reactions that can be life-threatening to people who have allergic reactions to sulfite.
In its present form estimates are that Radicava will cost nearly $150,000 a year, however MT Pharma America, the company which manufactures the drug, says it will provide co-pay assistance to patients with commercial insurance, and other help for uninsured patients or those who face delays in coverage. Some patients may also be qualified for free treatments.
One other thing I have learned about ALS appointments is that the medical staff never, ever lets you forget when your treatments are scheduled. Last Tuesday as I was talking to the administrator for directions to the VA facility in Salisbury, she said, “Just come in the main driveway and follow the signs to building 42. It’s a big complex but it’s easy to find, we’re the building right next to hospice.”
And so the roller coaster continues.
Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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