August 7, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Resistance Training, Tysabri Report, Cognigram, and Depression Resistance Training Can Slow MS Patients’ Brain Shrinkage, Clinical Trial Indicates Over the years, studies have shown the benefits of various types of exercise in improving MS symptoms. But here, …
August 4, 2017 Columns by Ed Tobias A Warning About ‘Stem Cell Tourism’ I regularly see comments on various social media sites from MS patients who have traveled, or who plan to travel, outside the U.S. to be treated with stem cells. Some of these patients have reported excellent results…
August 1, 2017 Columns by Ed Tobias MS Docs Tell How They Choose Treatments What does your neurologist consider when he or she is deciding how best to treat your multiple sclerosis? A recent report from Spherix Global Insights, a business intelligence and market research company that looks at drug…
July 31, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Myelin Repair, Ocrevus and Insurance, Cell Therapies In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week: Q Therapeutics Approved to Start Trial of Cell Therapy Aiming to Restore…
July 28, 2017 Columns by Ed Tobias MS Therapies: What’s Hot, What’s Not Ocvevus (ocrelizumab) is off to a running start, Tecfidera (dimethyl fumarate) leads the pills and the four injectable multiple sclerosis drugs are being used by fewer MS patients. But Copaxone (glatiramer acetate injection) remains…
July 25, 2017 Columns by Ed Tobias How Do You Answer ‘Are You Doing OK?’ When Asked About Your MS? “Are you doing ok?” It’s one of those questions we all get. And it’s one that most of us don’t like to answer. How do you respond when someone asks you that question? #1 You can say…
July 24, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Ocrevus and Insurance, Intimacy Issues, Breastfeeding In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week: Ocrevus Is Popular Among Neurologists, but Insurance Is a Growing Concern,…
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?
July 18, 2017 Columns by Ed Tobias Fighting in Court Over MS Generics Biogen is a big pharmaceutical company that produces a half-dozen MS drugs. Among them are Tysabri, Avonex and Tecfidera. And Biogen is doing all it can to protect its turf, particularly when it comes to its…
July 17, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Stem Cell Cautions, Myelin Mystery, Amprya Study and Zinbryta in the EU In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. Experts Call for Tighter Regulation of Stem Cell Therapies in Use at…
July 14, 2017 Columns by Ed Tobias She Has MS, She Voted for Obamacare, and She’s Worried Donna Edwards has multiple sclerosis. Edwards is currently unemployed. But a year ago she had a well-paying job with excellent medical benefits. Edwards was a member of the U.S. House of Representatives. In fact, she represented the…
July 11, 2017 Columns by Ed Tobias The Ogo: A 21st Century Mobility Scooter, but with a Hefty Price Tag About a year ago, I first learned about something called an Ogo. It was just in the development phase then, but it was the neatest thing I’d ever seen for getting around when your legs can’t…
July 10, 2017 Columns by Ed Tobias MS News That Caught My Eye: Young Patients Quit DMDs, Antioxidant to Slow Brain Decline, Interview with Top Ocrevus Doc, and Why Don’t I Smell That? In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. Younger MS Patients Who Are Hospitalized May Be at Higher Risk of Quitting…
July 7, 2017 Columns by Ed Tobias Researchers Working on a Band-Aid to Replace Shots How cool is this? Though it's not yet related to multiple sclerosis, researchers are developing a Band-Aid-size patch that can inoculate someone with the flu vaccine. The patch is made up of 100 solid, water-soluble microneedles that are just long enough to penetrate the skin. They’re contained in an area about the size of a dime. Adhesive helps the patch grip the skin during the administration of the vaccine, which is encapsulated in the needles and is released in about 20 minutes, as the needle tips dissolve. The patch is then peeled away and discarded like a used bandage strip. The researchers, working at Georgia Tech and Emory University, report that in their Phase I clinical trial the patch was just as effective in generating immunity against the flu as the traditional flu shot. They believe the microneedle patch can save money because it is easily self-administered, it can be transported and stored without refrigeration, and it’s easy to dispose of without needing a sharps waste container. Above all, says principal investigator Nadine Rouphael, MD, of the Emory University School of Medicine, “having the option of a flu vaccine that can be easily and painlessly self-administered could increase coverage and protection by this important vaccine.” Now, I don’t want to jump the gun. Although the researchers are working to develop these microneedle patches for use with other vaccines, including measles, rubella and polio, they’ve only completed the first phase of their clinical trials. They’re now planning a Phase 2 trial with more participants. Whether MS drugs might, someday, be administered this way is anyone’s guess. But, it certainly would be nice if one day, instead of jabbing yourself in the thigh for your scheduled MS shot, you could deliver your MS medication by just putting a Band-Aid on your skin.
June 30, 2017 Columns by Ed Tobias My Lemtrada Journey: A 6–Month Report It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?” The answer: I’m not sure. For many years, my…
June 27, 2017 Columns by Ed Tobias If My MRI Is Stable, Why Is My Walking Getting Worse? During a routine exam with my neurologist recently, I asked her a question I’d never thought to ask before: “Why do you order regular MRIs of my brain, but not of my spine?” Interestingly, within a few…
June 26, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Brain Scans, Spasticity, Tecfidera Study and Cigarettes In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. **** Harvard Study Finds No Link Between Clinical…
June 23, 2017 Columns by Ed Tobias Ocrevus, Hope, and a Suicide Postponed Several months ago, I wrote a column about Andrew Barclay. Barclay died in an assisted suicide in December. He’d had multiple sclerosis for many years. Colin Campbell is a 56-year-old MS patient who lives in Inverness,…
June 20, 2017 Columns by Ed Tobias Hyping MS Headlines Is Uncool Once again, over the past couple of weeks, we’ve been blasted with headlines trumpeting a new MS discovery. Last month there were headlines about an inexpensive acne drug that supposedly could be used to reduce the…
June 19, 2017 Columns by Ed Tobias MS News That Caught My Eye This Week: Pollution, Salt, Stress, and Air Travel In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. **** Air Pollution May Trigger Relapses in MS Patients, French…
November 30, 2023 Columns by Benjamin Hofmeister Is multiple sclerosis everywhere, or am I just more aware of it now?