living with MS

Take a minute … and relax. It’s been a fraught few weeks of numerous solo hospital visits, as my wife was first dealing with a dying father and then helping to organize his funeral, estate, and her own turbulent emotions. Her mum had died only four months ago.

Are you having trouble paying for MS medications? If so, you’re not alone. People change or lose their insurance, and plans change the medications they cover from year to year. Your neurologist may change your medication without realizing that moving you from an injection to an oral med may…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about multiple sclerosis? Visit our forum. This week’s question is inspired by the forum topic, “Are you a parent caregiver of a child with…

I like to keep my life as normal as possible. This can be difficult given the physical challenges multiple sclerosis and chronic pain pose. Nevertheless, I try. Saturday was one of those days. I mistakenly assumed I could tackle Costco — the Goliath to my David. Hence, I must…

Early-life use of antibiotics disrupts gut microbiota in a rat model of multiple sclerosis (MS) and provokes nervous system autoimmunity, ultimately aggravating disease severity, new research shows. Results also indicate early-life antibiotic use may have unfavorable consequences on regulation of the immune system. The research article, “…

Multiple sclerosis (MS) can make our bodies experience pain, become weak, and easily fatigue. We can find it difficult just to walk. These challenges can steal our motivation to be active. But without regular activity, we become sedentary, which can increase weakness and fatigue symptoms that cause additional health…

Medical Marijuana ‘Can Help Everyone,’ Says Director at Maryland Cannabis Facility Keeping in mind that the person quoted in this article, Mr. Castleman, is growing medical marijuana to make money, I wouldn’t expect him to say anything else. On the other hand, I firmly believe that some forms of…

“I’m alive,” said Shadow. “I’m not dead. Remember?” “You’re not dead,” Laura said. “But I’m not sure you’re alive, either. Not really.” This snippet of a longer conversation in Neil Gaiman’s “American Gods” is a strange and wonderful moment in the book — and not only because Laura…

Restrictive access policies by Medicare and a rising cost-sharing burden lead to an increased price of disease-modifying therapies for multiple sclerosis patients, according to new research. The findings also revealed that Medicare beneficiaries without a low-income subsidy may spend on average $6,894 for their MS treatments in 2019, with generic versions of Copaxone representing the highest burden. Approximately 25-30% of patients with MS are covered by Medicare through disability. In 2013, MS Medicare beneficiaries with MS and without low-income subsidies averaged $4,389 a year in out-of-pocket expenses, second only to hepatitis. Despite a greater number and diversity of DMTs for MS treatment, their price has increased substantially over the past two decades. In fact, expenses related to DMTs for MS are among the highest by class in the Medicare market. “It’s a dysfunctional market that lacks the typical incentives for most other consumer prices,” Daniel Hartung, the study’s lead author, said in an Oregon Health & Science University (OHSU) press release written by Erik Robinson. “Aside from the public optics, there are few incentives for companies not to raise prices. Most intermediaries in the drug distribution channel, including drug companies, benefit from higher prices,” Hartung said. These high prices may lead to reduced access, as insurance companies can restrict coverage or manage use through prior authorization or step-therapy policies, and high deductibles or cost-sharing components in health plans that increase the financial burden for patients. Now, a team at OHSU and the Oregon State University College of Pharmacy used prescription drug plan formulary files to analyze changes in coverage policies from 2007 to 2016, and to estimate out-of-pocket spending for DMTs for MS within Medicare Part D program, through which outpatient prescriptions are financed. Eleven DMTs available during the study period were analyzed. Tysabri and Lemtrada were not part of the analysis because they are delivered via intravenous infusion in the clinic setting, and are typically covered through Medicare Part B. Results revealed that the price for Betaseron , Copaxone 20 mg , Rebif, and Avonex — the four therapies available in 2007 — quadrupled over the 10-year study period. Except for Copaxone 40 mg and its 20 mg generic formulation (Glatopa, by Sandoz), prices for the other DMTs introduced after 2007 increased by 9–13% per year. These include Novartis’ Extavia (interferon beta-1b) and Gilenya (fingolimod), Biogen’s Plegridy (peginterferon beta-1a) and Tecfidera (dimethyl fumarate), and Sanofi Genzyme’s Aubagio (teriflunomide). In 2007, 99-100% of plans covered the four available medications, with the exceptions being Rebif (88%). These percentages fell to 54-89% in 2016. Coverage of the other DMTs varied between 21% (Extavia) to 92% for Copaxone 40 mg. In turn, coverage for the three oral options — Gilenya, Aubagio and Tecfidera — generally increased or was maintained over time, ranging from 46% for Aubagio to 83% for Gilenya. The use of prior authorization increased from 61-66% in 2007, to 84-90% in 2016. Also, the share of plans with at least one DMT available without limitations declined from 39% to 17%. The average projected out-of-pocket spending for 2019 across DMTs was $6,894. The highest projected out-of-pocket expenses ($8,219) are associated with generic glatiramer acetate, both Glatopa and Mylan’s 20 mg/mL and 40 mg/mL generic formulations, approved by the U.S. Food and Drug Administration in 2017. This is more than with any of Copaxone’s formulations. According to the team, this is the result of a higher coinsurance payment (37% vs. 25%) expected for generic medications compared to brand-name options, as well as the fact that manufacturers of generics do not provide discounts toward a beneficiary’s total out-of-pocket spending, unlike what is mandated by the Affordable Care Act for brand-name therapies. “This is a pernicious effect of the release of a generic and an unfortunate effect of Medicare rules,” Dennis Bourdette, MD, one of the study’s co-authors, said. A proposal by U.S. President Donald Trump's administration addresses this by eliminating manufacturer discounts from the calculation to determine a patient’s total out-of-pocket spending. Such strategy would reduce the disparity between brand-name and generic therapies, the researchers said. “In this study we found that Medicare beneficiaries with MS who require a [DMT] face considerable policy-related access restrictions and high out-of-pocket spending,” the researchers wrote. “There is an urgent need for policies that slow the growth of drug prices, improve access, and shield patients from excessively high out-of-pocket spending,” they concluded.

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic, “With MS I have learned the importance of…

I have a hard time asking for help. Even when it’s offered, my knee-jerk reaction is to decline. Only in desperation do I reach out for, or accept, much-needed assistance. I say I am OK more often than I am. I do things myself more than I should.

A collaborative initiative between Lyfebulb and Celgene — called “Addressing Unmet Needs in MS: An Innovation Challenge” — is inviting applications from U.S.-based entrepreneurs who have multiple sclerosis (MS), or who have been affected by the disease, and whose companies are trying to find solutions to address unmet needs…

Life never lets me forget its fragility. Sometimes my challenges seem like mountains to be scaled. Adversity has become the elephant in the room; it is ever present even when I refuse to acknowledge it. A few weeks ago, I faced what could potentially have been a medical crisis.

It’s been about nine months since we created the MS Forums section on the Multiple Sclerosis News Today website. It’s a place designed to host conversations about our MS experiences and to find some answers from reliable sources when you have a question. You can even begin your own…

Healthcare specialists for multiple sclerosis patients in the U.K. with advanced disease and challenging needs are getting support and recognition through a new program from the MS Trust. Called the Advanced MS Champions Programme, it will recognize six MS specialist “champions” working with people with advanced MS, and their families…

  I see a lot of answers to the question about why people stop, or refuse to start, an MS medication. “Thinking of stopping the…meds. Sick of the shots and how they hurt to take them” “I stopped all of them….all multiple times. It…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Have you tried the high dose biotin protocol?“, from…

I watched the sunrise with dread, my peaceful time disquieted by my own internal chatter. An 80-degree day would soon replace the cool mid-January morning. Not my favorite. I am a creature of conditioning. Pavlov would be proud. The mere sight of the hazy morning sun against the blue…

“If I were you two, I think I’d plan for the worst,” Amy, my physiatrist, said to my wife and me as we sat in the examination room. It was just after 11 a.m. on Friday, Jan. 18. January has become one of two pivotal months in terms of…

The question of how quickly to start a disease-modifying therapy (DMT) after a multiple sclerosis (MS) diagnosis is one that I frequently see when I browse online. It goes hand in hand with questions about which DMT is best to start with. There are many things to consider when…

“Oh no, not again.” My mind races and time slows as I crumble to the floor. Every downward movement is magnified, and so too is the pain of my twisted left foot and leg. They have become the resting place for my slumping body. My fuzzy and confused mind…

I’d be lying if I said I enjoyed the endless hours of Barney I was forced to endure when I babysat kids in the 1990s, but “The Clean Up Song” has stuck with me. Why? For one thing, it worked like a charm to get the house…

Not everyone is going to get it. And by “it” I mean our disease and the way it affects our lives. Few understand our limitations or the ramifications of pushing past them. Many people are perplexed when, having witnessed our smiles and strength, they see us suffering. Others…

Naboso Technology has expanded its product offerings with new insoles and training mats specifically designed to stimulate the nervous system through the skin on the bottom of the feet. The products were developed to help improve balance, posture, movement and restore motor function, as part of a neurorehabilitation strategy…

Last October actress Selma Blair revealed that she’d been diagnosed with multiple sclerosis (MS). She did it by posting the announcement on her Instagram account. Back then she wrote, “I have MS and I am ok.” She described her symptoms in some detail, but her overall…

An international survey of caregivers and adults with neurological diseases, including multiple sclerosis (MS), revealed that spasticity is a hidden burden, having a negative effect on the ability to perform everyday tasks, and that relieving its symptoms significantly improves patients’ quality of life. The survey was presented by…

My readers have recently brought something to my attention: They informed me that not all MS exacerbations (flare-ups, relapses, and attacks) are created equal. I have learned that along with the hardcore types, which usually require steroid treatment, there are also pseudo-exacerbations. I can always trace the causes of…

Fatigue is more prevalent among patients with progressive multiple sclerosis (MS), according to a study that surveyed patients on fatigue and factors related to it. In addition, increased fatigue severity correlated with greater physical, cognitive, and psychological impairment, although the strength of this link was largely the same…

One of the hardest things I’ve had to accept with MS is the necessity of asking for help. Pride and self-reliance dissipate remarkably quickly when you find yourself splayed on the floor and you no longer have the capacity to get up. In extremis, I then ask for help.

Can you use your mind to attack your MS, just as you use things such as medications and physical therapy? Some people who believe in the benefits of mindfulness think you can, at least to some extent. Mindfulness is defined as “the basic human ability to be fully present,…