July 16, 2018 News by Iqra Mumal, MSc MS Patients Need More Advice from Physicians on Dietary Guidelines, Study Shows Health professionals are often not discussing the importance of following national dietary guidelines with their multiple sclerosis (MS) patients, causing them to turn to other sources like the internet that may advise potentially harmful diets with serious consequences, according to an Australian study. The study, āDietary responses to…
May 17, 2018 Columns by Jennifer (Jenn) Powell With MS, I Have Learned the Importance of Being My Own Best Advocate Quality healthcare is imperative when living with a disease such as multiple sclerosis. While the operational definition of “quality” varies from person to person, I find it to be contingent on the same variable: the doctor/patient relationship. A relationship between a doctor and a patient is symbiotic. Any healthcare…
April 2, 2018 News by Diogo Pinto MS Patients Are Among the Most Satisfied with Their Healthcare, Surveys Show Multiple sclerosisĀ patients are among those with debilitating diseases who are most satisfied with their healthcare, two surveys indicate. Others who are satisfied include people withĀ amyotrophic lateral sclerosisĀ and Parkinsonās, according to the questionnaire-basedĀ PatientsLikeMeĀ research. In contrast, people with fibromyalgia, post-traumatic stress disorder (PTSD) and major depressive disorder…
March 9, 2018 Columns by Ed Tobias Getting Cash Back for Choosing Medical Services You know about credit cards that offer you cash back for the items you buy. How about getting cash back for selecting specific healthcare service providers for things like medical tests and lab work? Go to your insurance company’s website, then enter your zip code and the service…
February 2, 2018 Columns by Ed Tobias Affording Your MS … or Not, You’re Likely Paying Either Way 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.Ā You took early retirement because of…
November 30, 2017 News by Janet Stewart, MSc Health Costs Higher, But Outcomes Better for MS Patients Who Take Their Meds, Study Finds 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 atĀ Liberty University College of Osteopathic MedicineĀ 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 Ā and healthcare costs. In total, 681 participants answered questionnaires about medication adherence and disease outcomes, including theĀ Multiple SclerosisĀ 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.
November 9, 2017 News by Marta Figueiredo, PhD Survey Helps Improve Communication Between Women with MS and Healthcare Providers A national survey in the U.S. revealed that 98% of women newly diagnosed with multiple sclerosis struggle to discuss important personal concerns with their healthcare team.
October 19, 2017 Columns by Laura Kolaczkowski How Doctors’ Gender Can Influence Opinions on Healthcare Quality There are two doctors. Hereās your choice: One has a patient-centered approach to care, spends more time with you during appointments, and is more empathetic with your concerns. On average, patients under this doctor live longer. The other doctor spends less time in the appointment, struggles to listen…
September 27, 2017 Columns by Cathy Chester New Video Series Aims to Lift the MS Community When youāre living with multiple sclerosis, itās important to surround yourself with a community of people who give you the kind of support and understanding you need. When I was diagnosed in 1986, there was no internet to help me find a community,…
September 22, 2017 Columns by Ed Tobias It’s Time to Speak Up to Guard Your Healthcare Benefits Have you heard of a healthcare “reform” proposal in the U.S. Senate called “Graham-Cassidy?” If not, take heed because Graham-Cassidy is a last-ditch effort by Republicans on Capitol Hill, led by Senators Lindsay Graham (SC), Bill Cassidy (LA), Dean Heller (NV), and Ron Johnson (WI), to limit healthcare…
September 6, 2017 Columns by Mike Knight Large and In Charge: Building a Better MS Care Team āWhat else is going on?ā Matt, our family doctor of more than 15 years, asked. It was at the end of a mid-August appointment, one Iād made due to pain in my right shoulder, elbow, and hand. I wasnāt sure if it was related to MS…
July 19, 2017 News by Janet Stewart, MSc Costs Associated with Multiple Sclerosis Rise as Severity of Disease Increases, European Study Shows 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, āNew insights into the burden and costs of multiple sclerosis in Europe,ā 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 ā most importantly ā 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.
July 11, 2017 News by Stacy Grieve, PhD Long-term Use of Ampyra Lowers Medical Costs, Hospital Visits for MS Patients, Study Finds A recent study has found that continued use of Ampyra (dalfampridine extended-release, sold in the U.S. by Acorda Therapeutics) by patients with multiple sclerosis (MS) lowers both inpatient hospital visits and overall healthcare costs. Results from the study, titled āInpatient Admissions and Costs Associated with Persistent…
July 10, 2017 News by Charles Moore Experts Call for Tighter Regulation of Stem Cell Therapies in Use at Clinics Worldwide Advertising for stem cell therapies not supported by clinical research ā often made directly to patients and sometimes promoted as a "cure" for diseases like multiple sclerosis or Parkinson's ā is a growing problem that needs to be addressed and regulated, a team of leading experts say, calling such "stem cell tourism" potentially unsafe. Stem cell tourism is the unflattering name given to the practice of encouraging patients to travel outside their home country to undergo such treatment, typicaly at a private clinic. The article, titled "Marketing of unproven stem cellābased interventions: A call to action" and recently published in the journal Science Translational Medicine, was co-authored by scientists with universities and hospitals in the U.S., Canada, U.K., Belgium, Italy, Japan, and Australia. It focuses on the global problem of the commercial promotion of stem cell therapies and ongoing resistance to regulatory efforts. Its authors suggest that a coordinated approach, at national and international levels, be focused on "engagement, harmonization, and enforcement in order to reduce risks associated with direct-to-consumer marketing of unproven stem cell treatments." Treatments involving stem cell transplants are now being offered by hundreds of medical institutions worldwide, claiming efficacy in repairing tissue damaged by degenerative disorders like MS, even though those claim often lack or are supported by little evidence . They also noted that the continued availability of these treatments undermines the development of rigorously tested therapies, and potentially can endanger a patient's life. The researchers emphasize that tighter regulations on stem cell therapy advertising are needed, especially regarding potential clinical benefits. They support the establishment of international regulatory standards for the manufacture and testing of human cell and tissue-based therapies. "Many patients feel that potential cures are being held back by red tape and lengthy approval processes. Although this can be frustrating, these procedures are there to protect patients from undergoing needless treatments that could put their lives at risk," Sarah Chan, a University of Edinburgh Chancellorās Fellow and report co-author, said in a news release. Chan and her colleagues are also calling for the World Health Organization to offer guidance on responsible clinical use of cells and tissues, as it does for medicines and medical devices. "Stem cell therapies hold a lot of promise," Chan said, "but we need rigorous clinical trials and regulatory processes to determine whether a proposed treatment is safe, effective and better than existing treatments." According to the release, the report and its recommendations followed the death of two children at a German clinic in 2010. The clinic has since been shut down. Certain stem cell therapies ā mostly involving blood and skin stem cells ā have undergone rigorous testing in clinical trials, the researchers noted. A number of these resulted in aproved treatments for certain blood cancers, and to grow skin grafts for patients with severe burns. Information about the current status of stem cell research and potential uses of stem cell therapies is available on the website EuroStemCell.
May 22, 2017 News by James Frederick, PA-C, MMSc US Blacks, Hispanics Less Likely to Get Neurological Care in Doctor’s Offices and Clinics African- and Hispanic-Americans are less likely than whites to receive care for neurological diseases such as multiple sclerosis in a doctor’s office or clinic, according to a study. Many of them end up in a hospital emergency room after failing to obtain treatment that could have helped them avoid an…
May 9, 2017 Columns by Ed Tobias About America’s Healthcare Puzzle 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,…
April 27, 2017 News by Maria Verissimo, MSc MS Patients Seem to Present Earlier Symptoms of Disease Before Diagnosis Patients with multiple sclerosis (MS) may be developing the disease for up to five years before the first clinical diagnosis is made, a study has found. The study, “Health-care use before a first demyelinating event suggestive of a multiple sclerosis prodrome: a matched cohort study,” was published…
April 19, 2017 Columns by Mike Knight Getting a Second Opinion: Three Heads ā or More ā are Better Than Two It was my 2015 annual check-in, and my neurologist and I were in the exam room. I was sitting on one of those little stools with wheels, he was leaning across the exam table. We had just finished discussing my steadily worsening symptoms and treatment plan, which consisted…
March 2, 2017 Columns by Laura Kolaczkowski Which Improvements in Healthcare Would MS Advocates Like to See? I was in Washington, D.C. for a meeting, and had the opportunity to dine with some fellow multiple sclerosis advocates. I thought it might be of interest to get their take on the most pressing issues of 2017 for people living with MS. I wasnāt sure what to…
February 10, 2017 News by Joana Fernandes, PhD People with Chronic Diseases Support Obamacare More Than General Public, Survey Finds PeopleĀ with multiple sclerosis (MS) and other chronic diseases value the Affordable Care Act (ACA, also known as Obamacare) more than the general public, concludesĀ a poll conducted by PatientsLikeMe. These patients are also less inclined to repeal Obamacare, and they are more likely to believe Obamacare needs fewĀ changes to…
January 11, 2017 Columns by Laura Kolaczkowski MS PATHS: Be Aware of the Info You Share Would you open your bank account and write a blank check to just anyone requesting something of value from you? Of course not. So, why would we do that with our healthcare information? I was recently sent an informed consent form from the MS clinic where I am treated,…
November 28, 2016 News by Charles Moore Partnership Receives $1.2M from California Initiative to Advance Precision Medicine for MS Sutter Health, a not-for-profit healthcare network serving more than 100 northern California communities, has been awarded $1.2 million by theĀ California Initiative to Advance Precision MedicineĀ (CIAPM) to support patients living with multiple sclerosis (MS) and help improve how health matters are targeted and treated across the entire state.
October 25, 2016 News by Patricia Silva, PhD CannaCure Florida to Host November Medical Cannabis Education Conference in Tampa CannaCure Florida,Ā a patient-focused producer of medical cannabis and related products, will host physicians and medical professionals for a peer-to-peer medical cannabis educational conference Nov. 18 in TampaĀ to provide guidance forĀ incorporating medical cannabis into traditional medical practices. The event will be held 9 a.m. to 4:30 p.m. at the Cuban…
September 2, 2016 News by Patricia Silva, PhD MS, Spinal Injuries Highlighted at Paralyzed Veterans of America Summit Paralyzed Veterans of AmericaĀ recently held its annual health conference, calledĀ 2016 Summit + EXPO, focused on the latest research and discoveries in patient care for diseases that spanĀ multiple sclerosis andĀ spinal cord injuryĀ orĀ disease toĀ Ā amyotrophic lateral sclerosis. This year was the sixth such summit, held Aug. 30āSept. 1 in Orlando, Florida,…