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Ed Tobias

People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

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Articles by Ed Tobias

August 22, 2017 Columns by Ed Tobias

Congressmen Want Info About MS Drug Price Hikes, but Why?

MS drug manufacturers are in the sights of two members of Congress The companies are Bayer, Biogen, EMD Serono, Novartis, Sanofi Genzyme, Teva, and Roche. U.S. Reps. Elijah Cummings and Peter Welch, two Democrats who sit on the House Committee on Oversight and Government Reform, are concerned about what they're calling dramatic price increases for some MS drugs produced by those companies. In a news release, the congressmen say the price hikes have come "without warning, cause, or justification." They've sent letters to the companies seeking information about their profits and expenses. The letters also ask for documents about pricing strategies, patient assistance programs, and drug distribution systems. Cummings and Welch point to an American Academy of Neurology study of drug prices as evidence that some pharmaceutical companies appear to be increasing the prices of their older, less expensive drugs to bring those prices in line with those of the newer, more expensive DMTs that are available today. This kind of practice is known as “shadow pricing.” The congressmen refer to this study as being a bit dated, as it was published in May of 2015. It reviews the published prices of nine DMTs over a 20-year period, ending in 2013, and shows that prices for those older, first-generation DMTs increased at an annual rate that was five to seven times higher than general prescription drug inflation. In their news release, the lawmakers also referred to a report from the National Multiple Sclerosis Society that included a chart of drug price increases since the approval date for each drug.

July 21, 2017 Columns by Ed Tobias

Do MS Patients in the UK Get the Right Treatment Quickly Enough?

About two years ago, a report by the European Multiple Sclerosis Platform stated that only 21% of MS patients in the United Kingdom were receiving any kind of disease-modifying therapy. This is compared to 40% in France and 69% in Germany. Now, the U.K. branch of pharmaceutical giant Sanofi has published a report of its own, "The Missing Pieces." The report tries to answer, "Why is this so?" Here are some of the answers that were received online from a small group of healthcare professionals and MS patients: Nearly three-quarters of U.K. healthcare professionals think that people with MS face delays in starting on disease-modifying treatments (DMTs). Nearly one-quarter of MS patients there reported being unaware of some treatments that could help delay the onset of disability. Only half of people with MS say disability was discussed with their healthcare professional when they were first diagnosed, yet 69% of the healthcare professionals say it was discussed. Only a third of those patients say that "disability" is discussed in their regular MS appointments. Two-thirds of people with MS say that maintaining independence is their main treatment goal, followed by reducing relapses. The report also says that healthcare professionals believe the primary reason that DMTs are slow to be prescribed is lack of access in the U.K. to neurologists who specialize in MS. And, it says, 62% of MS specialist nurses and 47% of MS specialists thought this delay is also because of a shortage of healthcare facilities needed to deliver DMTs. Now, it needs to be noted that this survey involved only 100 MS specialist healthcare professionals and 120 MS patients in the U.K. And, as mentioned earlier, the survey was conducted by Sanofi, which claims to be the fourth largest pharmaceutical company in the world. Sanofi makes two big-time MS drugs: Aubagio (teriflunomide) and Lemtrada (alemtuzumab). Naturally, it has a vested interest in seeing that MS patients are treated with DMTs. (Full disclosure: I recently was compensated by Sanofi Genzyme to attend a meeting of "digital influencers" that the company held at its U.S. headquarters.) But drug sales aside, a case certainly can be made for treating MS patients with DMTs quickly after patients are diagnosed, and many drugs currently on the market have shown that they are able to modify the course of MS. And there's a case to be made about a need for better patient-healthcare provider communication. So, my question is: How do MS patients in the U.K. feel about access to DMTs? And to MS care, in general? Is this small report correct about the lack of knowledge by patients about their treatment options? Is it correct about the lack of MS specialists and resources in the U.K.? Do MS patients outside of the U.K. have similar concerns?