Cost of treatment

Several years ago, I tried to get my insurance company to approve a functional electronic stimulator (FES). It’s a durable medical device that significantly improved my left foot drop. My request was well-supported by documentation from my neurologist and the physical therapist who was evaluating me for…

Have you been in this Catch-22? You had great medical insurance when you were working. But, you’re not working anymore. Your insurance now comes with a $6,000 deductible and it doesn’t cover any medications. That $6,000 is about a fifth of your yearly income. You took early retirement because of…

Britain’s National Health Service should cover the multiple sclerosis therapy Extavia, the National Institute for Health and Care Excellence (NICE) has recommended. The health service usually follows the institute’s recommendations. So NICE’s endorsement means there is a good chance the health service will begin covering the Extavia prescriptions that…

IMPAQ Health has created a calculator that will help New York State residents compare the cost of hundreds of health insurance plans. The NYPlanCosts Calculator should be particularly beneficial to people with one of eight chronic conditions — multiple sclerosis, rheumatoid arthritis, heart disease, hepatitis C, diabetes, HIV, schizophrenia, breast cancer and…

Multiple sclerosis patients who adhere strictly to their medication pay more but stay healthier in the long run than those who don't, a study found. Researchers at Liberty University College of Osteopathic Medicine in Lynchburg, Virginia, analyzed data from 2004 to 2013, including electronic health records, insurance claims and self-reported medication adherence. They based their assessment of health outcomes on inpatient admission, emergency room visits, outpatient appointments  and healthcare costs. In total, 681 participants answered questionnaires about medication adherence and disease outcomes, including the Multiple Sclerosis Impact Scale and the Kurtzke Expanded Disability Status Scale. Also used was the Treatment Satisfaction Questionnaire for Medication to assess satisfaction with the medication taken. Patients who took their medicines most rigorously reported 14 percent less severe physical impact of MS, and 17 percent less severe psychological impact than those with low adherence. These patients also reported a 12 percent decrease in disability level, and believed their treatment plan was 7 percent more effective. However, the total overall costs were higher for patients who adhered to their doctor's orders. The researchers said it's more difficult to detect improvements in health outcomes for MS than for other chronic illnesses. This is partly because the only test for changes in disease status is brain imaging, which is expensive and not done routinely. Furthermore, brain imaging only detects new lesions following a relapse, which cannot be compared to previous or future imaging in a quantifiable way. In fact, no simple tests exist for measuring disease severity in MS as there are in other chronic diseases, making it difficult to determine whether treatment benefits justify their cost.

The National Organization for Rare Disorders (NORD) says it’s “disappointed and dismayed” after the House of Representatives voted 227-205 last week to repeal the Orphan Drug Tax Credit as part of a U.S. tax reform package. A similar package before the Senate Finance Committee does not repeal the credit…

If you have MS, you’ve probably used a specialty drug. My first was Avonex, which I began to use about 1998. Several others followed. There’s no formal definition of a specialty drug, but these therapies have several things in common. First, they’re expensive. According to the vice president in…

Do you ever stop and ponder the value of MS drugs? I’m not talking about if they work and the ways they improve our lives. I’m thinking of the COST of them and what their pricing means to investors. I get several market analysis reports on the pharmaceutical industry,…

Ocrevus (ocrelizumab) is a less expensive treatment option for relapsing multiple sclerosis (MS) than subcutaneous interferon beta-1a (Rebif) in the long-run, according to a cost-effectiveness analysis published in the Journal of Medical Economics. In addition to lower total costs over a 20-year period, the analysis suggested that Ocrevus…

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.

Ocrevus' market introduction is off to a stellar start, with nearly half of neurologists surveyed by Spherix Global Insights saying they are using the therapy — the first ever approved for both relapsing and primary progressive multiple sclerosis. Within six months, 80 percent of neurologists are expected to prescribe Ocrevus, according to a report in the second-quarter edition of RealTime Dynamix: Multiple Sclerosis by Spherix Global Insights. But insurance is having an increasing impact on treatment decisions, the report also found, according to a Spherix press release. More patients are receiving less than optimal care because of inadequate or inferior insurance coverage, and neurologists report that insurers have become more aggressive in managing MS patients. Surveying 104 neurologists in June, the report showed that physicians followed through with their intent — reported in earlier surveys — to prescribe Ocrevus as it became available. With Ocrevus being the first approved drug for primary progressive MS, these patients make up a sizable part of those receiving it. But patients with relapsing forms of MS represent more than half of new users, according to the report. Ocrevus was also, by far, the drug that neurologists had learned most about, and felt most excited about using, the report added. Most of the patients on Ocrevus were switched from Biogen's Tysabri or Rituxan — a drug that, like Ocrevus, is also produced by Genentech/Roche. One in five patients was switched from an oral disease-modifying treatment, mainly Biogen’s Tecfidera (dimethyl fumarate). But for about 25 percent of Ocrevus-treated patients, the drug is the first disease-modifying therapy they have received. The survey also revealed that patients are the driving force behind new Ocrevus prescriptions. Seventy-one percent of neurologists receive requests from patients who want to start the treatment. While neurologists have to turn some of these requests down for various reasons, a large proportion of those who ask for the treatment receive it. Another insight from Spherix’s “RealWorld Dynamix: DMT Brand Switching in MS” survey was that patients' requests for a specific brand are often honored. Seventy-seven percent were prescribed the brand they requested, the survey showed. Interestingly, neurologists believed the number to be lower. Most patients who made a specific request, the report indicated, asked for Tecfidera in the past year and a half. Tecfidera is by far the leading oral disease-modifying drug prescribed in MS. Meanwhile, according to the report, Biogen's Avonex, Bayer's Betaseron, Teva's Copaxone, and EMD Serono's Rebif continue on a downward path. At least 30 percent of neurologists report lower use of these therapies in the past three months. Patients previously on these drugs are mainly switched to oral disease-modifying drugs. But this trend is projected to slow, with only Sanofi-Genzyme's oral Aubagio (teriflunomide) continuing to grow. But the choice of treatment may increasingly be driven by insurance. Compared with the same quarter of 2016 — when neurologists estimated that 14 percent of patients received suboptimal treatment because of poor insurance coverage — 20 percent of patients are now judged to be in this situation. Also, 60 percent of surveyed physicians feel that insurance companies have become more aggressive in MS treatment management. A similar percentage also say that insurance policies influence how they prescribe specific disease-modifying drugs.

Costs associated with multiple sclerosis increase as the disease worsens, according to a study of more than 16,000 patients in 16 European countries. The study, “New insights into the burden and costs of multiple sclerosis in Europe,” was published in the Multiple Sclerosis Journal. Researchers obtained their information from patient self-reporting. Patients used the Kurtzke's Expanded Disability Status Scale (EDSS) to assess the severity of their disease. They also reported on their quality of life and their resource use. Patients were divided into three categories. Those with a score between 0 and 3 on the EDSS scale were deemed to have a mild disease. The disease of those with scores of 4 to 6.5 was considered moderate. And the disease of those with scores of 7 to 9 was classified as severe. Patients assessed their health-related quality of life with the EuroQol Five Dimensions questionnaire. The average age of the 16,808 participants was 51 and a half years old. The work capacity of MS patients dropped from 82 percent of a healthy person's to 8 percent as the severity of the disease increased, researchers said. Patients' quality of life scores were about the same as those seen in the general population when they had a mild disease. But they plunged to less than zero when their disease became severe. The mean annual cost of having a mild form of MS was 22,800 euros, or around $26,300, researchers reported. The cost of having a moderate disease was 37,100 euros, or about $42,800. And the cost of a severe disease was 57,500 euros, or $66,340. Healthcare accounted for 68 percent of total costs with a mild disease, 47 percent with a moderate disease, and 26 percent for a severe disease. "Costs are dependent on the availability, use and price of services and on disease severity," the researchers wrote. "Costs were related to disease severity" in all countries "and were dominated by production losses, non-healthcare costs and DMTs," or disease-modifying therapies. Those therapies may be a key reason why the highest percentage of healthcare costs occurred in patients with a mild disease, researchers said. Doctors prescribe a lot of DMTs to this group. Other factors related to the high percentage were that many patients with mild diseases are still able to work -- meaning they incur fewer production-loss costs -- and this group requires fewer community services. As MS becomes more severe, patients' production losses rise, and they use more community services. "The intensity of healthcare service use varied widely across the countries," researchers wrote. "This reflects differences in healthcare organization, medical traditions, ease of access and – most importantly – availability of given services." Researchers also assessed patients' levels of fatigue and cognitive difficulties. Ninety-five percent reported fatigue, and 71 percent cognitive difficulties. Fatigue and cognitive difficulties had significant impacts on quality of life scores, researchers said.

A few weeks ago, I wrote about some of the invisible costs of living with MS. Writing that column really got my mind thinking about all the ways that my MS costs me money. In fact, I couldn’t stop thinking about it! In the days that followed, I…

I’ve just been reminded, as someone with multiple sclerosis, how fortunate I am to have good medical insurance. Unlike most other countries, where medical care is a right, in the U.S. that care is a privilege. Here the quality of care and too often the availability of that…

MS is sneaky. It is expert at evading detection and diagnosis, and often brings a host of invisible symptoms that may come and go at random. MS also brings invisible costs — expenses beyond the obvious medications, supplements, assistive devices, and healthcare. I am not talking about externalities,…

There’s been lots of chatter on social media since the U.S. House of Representatives passed a measure last week that’s intended to repeal the Affordable Healthcare Act (Obamacare) and replace it with a new healthcare law. Lots of us with serious medical conditions are: a) worried, b) angry,…

With last month’s approval of the multiple sclerosis drug Ocrevus, I’ve again heard the plea “But how can I afford it?” Ocrevus carries a price tag of about $65,000 a year. That’s not high compared to some other MS drugs, but it still can mean a higher…

As Republicans in Congress prepare to repeal and replace the Affordable Care Act (ACA), the National Multiple Sclerosis Society and 10 other nonpartisan patient groups are urging lawmakers in Washington to keep health insurance affordable, accessible, adequate and understandable for all Americans. The 11 organizations will evaluate all proposed changes to the…

A lot of factors go into our decisions when we select the drug we’re going to use to fight our multiple sclerosis. How well will it work? What are the possible side effects and how serious could they be? How will using the drug (taking a pill, giving myself a…

After my recent insurance experience, which I share here, I never again will wonder why some people give up on claiming their medical benefits. I have received Botox treatment for spasticity of my quad and hamstring muscles. This is an FDA-approved use, but to get this treatment there has…