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Access to multiple sclerosis (MS) treatments inadequate in British Columbia
Access to multiple sclerosis (MS) treatments inadequate in British Columbia

Cision Canada

time3 days ago

  • Health
  • Cision Canada

Access to multiple sclerosis (MS) treatments inadequate in British Columbia

VANCOUVER, BC, Aug. 7, 2025 /CNW/ - Teresa Alfeld, a filmmaker who was recently diagnosed with multiple sclerosis (MS), is calling for the provincial government to fund a medication that is available in every other province in Canada – but not BC. Teresa was diagnosed with MS in 2024, 20 years after her Type 1 diabetes diagnosis. Because of her diabetes, she was recommended to treat her MS with ofatumumab (Kesimpta), because some of the other available treatments for MS could worsen her Type 1 diabetes. Hower, this medication is not covered by PharmaCare. BC is the only province in Canada that does not provide public coverage for Health Canada-approved, anti-CD20 therapies for relapsing MS – ofatumumab (Kesimpta) and ocrelizumab (Ocrevus). "My diagnosis was a gut-punch. After years of hard work building my filmmaking career, my future was suddenly in jeopardy," says Teresa. "On top of processing this life-changing diagnosis, I've had to fight for access to ofatumumab, a drug that I could easily access if I lived anywhere else in Canada." Ofatumumab is the only monoclonal antibody available as a subcutaneous self-injection rather than being delivered via infusion at a specialty clinic. This fills a significant gap in MS treatment for persons with MS who are recommended to be treated with a high-efficacy monoclonal antibody, like Teresa. Funding high-efficacy medications reduces the financial burden to health and social systems through fewer MS relapses requiring hospitalization and loss of employment. According to the Conference Board of Canada, as disability from MS worsens, costs incurred outside the health care system, such as informal care and productivity losses, continue to increase until they comprise two-thirds of all health costs. The appropriate use of disease-modifying therapies (DMTs) can provide significant health and economic benefits to people living with MS. Teresa and her family are now considering moving out of the province so she can access ofatumumab to manage her MS. "Not having access to Kesimpta doesn't just affect my health – it affects my ability to plan ahead and build a stable life," says Teresa. "This is an equity issue, plain and simple. I'm not asking for special treatment from the government, but for fair treatment for myself and every other British Columbian living with MS." MedAccessBC Urges Government to Take Action Teresa's story highlights a larger, systemic issue that the Medicines Access Coalition — BC (MedAccessBC) has been working to address for over two decades. MedAccessBC represents over 30 patient care organizations and advocates for fair, timely, and equitable access to medications for British Columbians. "People living with MS in BC should be able to access all Health Canada-approved treatments, which all other Canadians can access," says Don Bindon, co-chair of MedAccessBC. "MS is a disease that strikes people in the prime of their lives, and access to high-efficacy medications soon after diagnosis can delay disease progression. The provincial government should consider the productivity advantages of funding ofatumumab and ocrelizumab for relapsing MS." As a non-profit coalition, MedAccessBC continues to collaborate with patient communities, healthcare professionals, and policy makers to ensure that health decisions prioritize outcomes and do not compromise patient well-being in the name of cost containment. Call to Action MedAccessBC is urging the provincial government to approve and fund ofatumumab and ocrelizumab for relapsing MS through the BC PharmaCare program without further delay. Teresa's message to decision makers is simple: "While MS is unpredictable, treatment shouldn't be. I'm asking for the ability to manage my disease based on what works for me, not what PharmaCare happens to cover." About multiple sclerosis (MS) Canada has one of the highest rates of multiple sclerosis (MS) in the world. On average, 12 Canadians are diagnosed every day. MS is a neurological disease of the central nervous system (brain, spinal cord). Most people are diagnosed with MS between the ages of 20 and 49. MS is a continuous disease process that progresses through different stages over time, and everyone experiences it differently as severity, symptoms and response to treatment can vary from one person to the next. The unpredictable, episodic yet progressive nature of MS makes it particularly challenging to maintain an adequate quality of life. About the Medicines Access Coalition of BC: MedAccess BC advocates for improved access to medications and health technologies for individuals with chronic diseases. Representing over 30 patient organizations, it has been working since 1997 to improve access to evidence-based medicines through BC's PharmaCare program.

Nancy Davis, Visionary Philanthropist and Founder of Race to Erase MS and Cure Addiction Now Appointed to the Tharimmune Board of Directors
Nancy Davis, Visionary Philanthropist and Founder of Race to Erase MS and Cure Addiction Now Appointed to the Tharimmune Board of Directors

Miami Herald

time5 days ago

  • Health
  • Miami Herald

Nancy Davis, Visionary Philanthropist and Founder of Race to Erase MS and Cure Addiction Now Appointed to the Tharimmune Board of Directors

RED BANK, NJ / ACCESS Newswire / August 5, 2025 / Tharimmune, Inc. (NASDAQ:THAR), ("Tharimmune" or the "Company), a clinical-stage biotechnology company dedicated to developing innovative therapeutic candidates for inflammation, immunology, and critical unmet medical needs, today proudly announced the appointment of Nancy Davis, a globally recognized philanthropist, tenacious advocate, and the visionary founder of the renowned Race to Erase MS and Cure Addiction Now foundations, to its Board of Directors. Ms. Davis brings an unparalleled fusion of deep-seated patient advocacy, strategic fundraising, and a profound, personal commitment to accelerating scientific discovery in areas of critical unmet medical need. Her decades of consummate resilience and unwavering patient-centric approach, born from personal experience, make her an ideal and impactful addition to the Board. Ms. Davis's formidable journey into medical advocacy was ignited by her own diagnosis of multiple sclerosis (MS) in 1991, at the age of 33. Despite being told there was little hope, Nancy refused to accept this prognosis, proactively seeking new therapies and embracing a health-conscious lifestyle. This deeply personal challenge fueled her determination to fundamentally transform the landscape of MS research and treatment. In 1993, she established the Race to Erase MS, an organization that has since raised over $56 million, directly catalyzing groundbreaking research through its innovative "Center Without Walls" program. This pioneering initiative actively dismantles traditional research silos, fostering unprecedented collaboration among leading institutions such as UC San Francisco, Harvard, Yale, USC, Johns Hopkins, UCLA, Cedars-Sinai, and Oregon Health Sciences University. Under her visionary leadership, Race to Erase MS has funded numerous pilot studies instrumental in developing FDA-approved therapies, including the scientific discoveries in B-Cell therapies like Ocrevus®, Briumvi®, and Kesimpta®, which are now gold standards of MS treatment and have completely changed the landscape of the disease. When Nancy founded the organization, there were no FDA-approved treatments for MS but her guiding principle, "take the impossible and make it possible," perfectly encapsulates her profound impact. "Tharimmune is incredibly honored and privileged to welcome Nancy Davis to our Board," said Vincent LoPriore, Executive Chairman of the Board of Director. "Nancy's extraordinary dedication to advancing medical research, coupled with her unique and powerful perspective as both a patient advocate and a formidable force for scientific collaboration, is absolutely invaluable as we continue to develop innovative, life-saving therapies. Her vision aligns perfectly with our mission to bring life-changing solutions to patients, especially as we advance our investigational product, TH104. Our lead is being specifically developed to counter the effects of weaponized fentanyl for military use and chemical incident responders, and it may potentially hold significant promise for broader applications in addressing the devastating opioid crisis. Nancy's profound understanding of patient needs and her unwavering commitment to finding solutions for addiction make her an indispensable and critical voice on our Board. Her proven track record of converting personal adversity into global advocacy and tangible scientific progress is truly inspiring." Ms. Davis co-founded Cure Addiction Now (CAN) with her son, Jason and this pivotal foundation is dedicated to revolutionizing the understanding and treatment of substance use disorder (SUD) by funding cutting-edge, collaborative research that addresses both the physical and emotional aspects of addiction. CAN aims to find therapies that combat withdrawal and cravings, with the ultimate goal of achieving lasting sobriety. Her transformative work with CAN continues to fiercely challenge stigmas and relentlessly push for scientific breakthroughs to combat one of the most pressing public health crises of our time. "I am thrilled and deeply motivated to join the Board of Directors at Tharimmune and contribute to their ongoing, exciting work," said Nancy Davis. "Throughout my career, I've seen firsthand the profound power of focused, collaborative scientific endeavor to bring about real, tangible change for patients. I am deeply impressed by Tharimmune's commitment to developing critical countermeasures, such as TH104. My personal experiences with the devastating impact of addiction have only strengthened my resolve to support truly innovative solutions and I eagerly look forward to contributing my insights and advocacy to help accelerate the development and potential broader impact of this solution and other transformative therapies." About Tharimmune, is a clinical-stage biotechnology company developing a diverse portfolio of therapeutic candidates in immunology, inflammation and oncology. Its lead clinical asset, TH104, is being developed for a specific indication via a 505(b)2 pathway for respiratory and/or nervous system depression in military personnel and chemical incident responders who may encounter environments contaminated with high-potency opioids. The expanded pipeline includes other indications for TH104, such as chronic pruritus in primary biliary cholangitis and TH023, a new approach to treating autoimmune diseases along with an early-stage multispecific biologic platform targeting unique epitopes against multiple solid tumors through its proprietary EpiClick™ Technology. The Company has a license agreement with OmniAb, Inc. to access their antibody discovery technology for targeting specified disease markers. Tharimmune continues to position itself as a leader in patient-centered innovation while working to deliver long-term value for shareholders. For more information, visit: Forward Looking StatementsCertain statements in this press release are forward-looking within the meaning of the Private Securities Litigation Reform Act of 1995. All statements, other than statements of historical facts, contained in this press release, including statements regarding the timing and design of Tharimmune's future Phase 2 trial, Tharimmune's strategy, future operations, future financial position, projected costs, prospects, plans and objectives of management, are forward-looking statements. The words "anticipate," "believe," "continue," "could," "depends," "estimate," "expect," "intend," "may," "ongoing," "plan," "potential," "predict," "project," "target," "should," "will," "would," and similar expressions are intended to identify forward-looking statements, although not all forward-looking statements contain these identifying words. The Company may not actually achieve the plans, intentions, or expectations disclosed in these forward-looking statements, and you should not place undue reliance on these forward-looking statements. Actual results or events could differ materially from the plans, intentions and expectations disclosed in these forward-looking statements. Factors that may cause such differences, include, but are not limited to, those discussed under Risk Factors set forth in our Annual Report on Form 10-K for the year ended December 31, 2024 and other periodic reports filed by the Company from time to time with the Securities and Exchange Commission. In addition, the forward-looking statements included in this press release represent the Company's views as of the date of this release. Subsequent events and developments may cause the Company's views to change; however, the Company does not undertake and specifically disclaims any obligation to update or revise any forward-looking statements to reflect new information, future events or circumstances or to reflect the occurrences of unanticipated events, except as may be required by applicable law. These forward-looking statements should not be relied upon as representing the Company's views as of any date subsequent to the date of this release. Contacts:Tharimmune, SOURCE: Tharimmune Inc.

Primary Progressive MS: Myths vs. Facts
Primary Progressive MS: Myths vs. Facts

Health Line

time10-06-2025

  • Health
  • Health Line

Primary Progressive MS: Myths vs. Facts

Misconceptions about primary progressive multiple sclerosis (PPMS) are common, especially since the condition can look different for everyone. Knowing what's true (and what's not) can help you feel more informed and empowered. Primary progressive multiple sclerosis (PPMS) is a complex condition that looks different from person to person. Symptoms, experiences, and rates of progression can vary widely. Because PPMS isn't as well-known as other types of multiple sclerosis (MS), myths and misconceptions often fill the gaps. That can make it harder to find trustworthy answers when you're trying to learn more about the condition. Here, we break down some of the most common myths about PPMS and share the facts behind them. Myth#1: There will never be a cure for PPMS Fact: While there's no cure yet, treatment options are expanding, and research is ongoing. In 2017, the Food and Drug Administration (FDA) approved Ocrevus (ocrelizumab) as the first disease-modifying therapy (DMT) for PPMS. In 2024, a new formulation called ocrelizumab and hyaluronidase-ocsq (Ocrevus Zunovo), a subcutaneous injection administered twice a year, was approved. This new injection offers a quicker, approximately 10-minute administration alternative to the traditional intravenous infusion. Ocrevus and Ocrevus Zunovo are currently the only FDA-approved DMTs for PPMS. However, researchers are actively exploring new therapies. For instance, tolebrutinib, a Bruton's tyrosine kinase (BTK) inhibitor, is undergoing phase 3 trials to assess its potential in slowing PPMS progression. Additionally, scientists are investigating treatments aimed at repairing myelin, the protective sheath around nerves damaged in MS. One such study involves combining metformin, a common diabetes medication, with clemastine, an antihistamine, to promote myelin repair. Myelin repair is important because it may help restore nerve function and slow disease progression. Although a cure for PPMS has yet to be found, these developments reflect a growing commitment to improving treatment options and outcomes. Myth: PPMS primarily occurs in females Fact: PPMS affects people of all sexes at the same rate. While relapsing-remitting multiple sclerosis (RRMS) is more common in people assigned female at birth (AFAB), affecting them two to three times more often than those assigned male at birth (AMAB), PPMS affects AFABs and AMABs in roughly equal numbers. It's important not to assume the type of MS based solely on sex. Regardless of gender, if you experience symptoms suggestive of MS, consult a healthcare professional for an accurate diagnosis. Myth: PPMS is an older person's disease Fact: PPMS typically begins in mid-adulthood, not old age. While PPMS tends to have a later onset than other forms of MS, it doesn't primarily affect older adults. On average, people with PPMS start experiencing symptoms around the age of 40. Myth: A PPMS diagnosis means you'll be disabled Fact: Disability progression in PPMS varies widely, and many people maintain mobility and independence for years. PPMS can lead to physical disability, but how quickly or whether it develops looks different for everyone. Some people notice gradual changes, while others may stay stable for long stretches of time. Not everyone will need mobility aids like canes or wheelchairs, especially early on. A 2022 study found that about 10% of people with MS experience severe disability within 5 years of diagnosis. That number rises to 25% within 10 years and then increases to 50% after 18 years. Still, this doesn't mean you should expect disability after receiving a PPMS diagnosis. The location of lesions, your overall health, and how early you begin treatment can all play a role in how the condition progresses. Working with your doctor on a treatment plan that includes physical or occupational therapy and regular movement can help you stay active and independent for longer. Myth: Having PPMS means you have to quit your job Fact: Many people with PPMS continue working, sometimes with a few adjustments. A PPMS diagnosis doesn't automatically mean you need to stop working. While symptoms like fatigue, changes in memory or thinking, or mobility issues can make certain jobs more challenging, many people with PPMS continue in full- or part-time work, especially in the early stages. Everyone's experience with PPMS is different, so your ability to work will depend on your specific symptoms and the demands of your job. If you're facing obstacles, workplace accommodations, like flexible hours, assistive devices, or ergonomic adjustments, may help you stay on the job. A conversation with your doctor or a vocational (work) counselor who understands chronic conditions can also help you explore options that support your health and independence. Myth: No medications help PPMS, so you should investigate natural remedies Fact: There are FDA-approved medications that can help slow the progression of PPMS, including ocrelizumab. While some natural remedies might offer symptom relief, they aren't always safe or proven to be effective. For years, there were no FDA-approved treatments for PPMS. That changed in 2017 when Ocrevus (ocrelizumab) became the first medication approved specifically for PPMS. In a study of 732 people with PPMS, those who received Ocrevus experienced a slower rate of disability progression compared to those who received a placebo. It remains the only approved disease-modifying therapy for this form of MS. Doctors may also prescribe medications to manage specific symptoms, such as antidepressants for mood changes or muscle relaxants for spasms. Some people turn to natural remedies like herbal supplements, acupuncture, or cannabis. Research into these options is ongoing, but so far, there's no strong evidence that they're safe or effective for treating MS symptoms. Some supplements can even interact with prescription drugs. If you're considering natural treatments, talk with your doctor first to avoid potential side effects or interactions. Myth: PPMS is ultimately an isolating disease — no one will understand what you're going through Fact: You're not alone, and you don't have to go through it alone either. While PPMS can feel isolating at times, many others are navigating similar challenges. It's estimated that nearly 1 million people in the United States are living with MS, and about 10% to 15% of them have PPMS. Thanks to growing awareness and advocacy, there are now more resources and support networks than ever. Support groups, both in-person and online, offer a space to connect with others who understand what you're going through. If group support isn't for you, that's OK too. Talking with a trusted friend, loved one, or therapist can still help ease feelings of isolation and improve emotional well-being. What matters most is finding a form of support that feels right for you. Myth: PPMS is deadly Fact: PPMS is a lifelong condition, but it's rarely fatal. The progressive nature of PPMS and the fact that there's no cure can understandably lead to fears about long-term outcomes. But while PPMS can affect mobility, thinking, and daily functioning, it's not considered a life threatening illness. Most people with MS who don't have severe disabilities can expect to live another 30 to 35 years after diagnosis. Recent research has shown that even after significant disease progression, many people continue to live for years. For example, after someone loses the ability to walk independently, on average, at around age 51, life expectancy is about 13 more years. Advances in treatment, early intervention, and lifestyle changes can help manage symptoms, reduce complications, and support overall health. Taking care of your physical and emotional well-being through exercise, a balanced diet, regular checkups, and support can make a big difference in quality of life. It's important to note that with ongoing advances in treatment, the outlook for people with PPMS continues to improve. Current data on disability and life expectancy may not reflect what's possible in the future. Takeaway Misconceptions about primary progressive multiple sclerosis (PPMS) can add confusion and fear to an already complex condition. However, the reality is that PPMS doesn't always follow the path people expect. From treatment options to life expectancy, the facts paint a more hopeful and nuanced picture. While every experience with PPMS is different, understanding the reality behind the myths can help you make informed choices, find support, and feel more in control of your journey.

Does Medicare Cover IV Infusions?
Does Medicare Cover IV Infusions?

Health Line

time20-05-2025

  • Health
  • Health Line

Does Medicare Cover IV Infusions?

Medicare covers intravenous (IV) infusion therapy when a doctor prescribes it as medically necessary. Original Medicare Part A typically covers the costs if you have an IV infusion during an inpatient hospital stay. If you have an IV infusion on an outpatient basis, Original Medicare Part B can cover eligible expenses. Out-of-pocket costs apply in both cases. Medicare Advantage plans must cover the same services as Original Medicare, so coverage for IV infusions is the same. However, out-of-pocket expenses may differ. Does Medicare cover IV infusions? Original Medicare (parts A and B) and Medicare Advantage (Part C) plans may all cover IV infusions if they're medically essential. Confirming your hospital status (inpatient or outpatient) with your healthcare team is important, as this can affect how much you pay out of pocket and which Medicare part can cover services. Original Medicare comprises parts A and B. Part A covers inpatient care, where you experience hospital admission for care. If you receive an IV infusion during your hospital stay, you must pay the 2025 deductible of $1,676 per benefit period. A benefit period starts when you receive a hospital status confirmation as an inpatient and ends when your team discharges you and doesn't provide inpatient care for 60 consecutive days. Part B covers outpatient care, including overnight hospital stays, so checking your hospital status is vital. In 2025, the Part B deductible is $257, and you must pay this amount before the plan pays its share of costs toward an IV infusion. How much does an IV infusion cost? IV infusions can vary in cost depending on the type of drug or fluid you receive. If a doctor prescribes a salt treatment, they may use IV sodium chloride. These saline solutions have several medical purposes, including treating dehydration and electrolyte imbalances. Saline-only IV solutions can be relatively inexpensive, but the costs can increase significantly for IV medications. For example, an initial dose of IV morphine for pain management can cost around $145. In contrast, the current list price for ocrelizumab (Ocrevus), a medication that manages multiple sclerosis (MS), is around $78,000, although people don't usually pay this. Medicare and at-home infusions Home infusion therapy means getting IV or subcutaneous drugs or biologicals at home. You need the drug, equipment like a pump, and supplies, such as tubing and cannulas. Nursing services are also necessary so that you or a caregiver can learn how to administer the medications safely. Medicare Part B covers home infusion equipment and supplies as durable medical equipment (DME). It also covers the required nursing services to teach you how to administer the medications. You must typically pay 20% of eligible expenses as a coinsurance under Part B.

DJ Scoob SA: Battling multiple sclerosis through music
DJ Scoob SA: Battling multiple sclerosis through music

IOL News

time22-04-2025

  • Health
  • IOL News

DJ Scoob SA: Battling multiple sclerosis through music

Despite the challenges of multiple sclerosis, DJ Scoob SA continues to light up dance floors across Cape Town. DJ Scoob SA, a well-known Cape Town artist, continues to DJ while battling multiple sclerosis (MS), while his wife has started a BackaBuddy campaign to raise funds for his Ocrevus treatment. For Nathan Williams, aka DJ Scoob SA, DJ'ing is not just a career, it's a lifeline and passion. In 2013, Williams's life changed dramatically when he was diagnosed with MS and has been receiving treatments, which cost up to R30 000 per dose of Ocrevus infusion. MS is a disease that causes the breakdown of the protective covering of nerves and can cause numbness, weakness, trouble walking, vision changes and other symptoms. Williams currently has secondary-progressive MS and there is no cure. At least 20-40% of people with relapsing-remitting MS can eventually develop a steady progression of symptoms, which is known as secondary-progressive MS. MS has affected most parts of Williams's life and that of his family, but he remains positive with their support. 'I was still in school when I was diagnosed. At the time, I was very fit and actively involved in sports. 'I had already developed a passion for DJ'ing while in high school and dreamed of pursuing a career in sports. "However, after his diagnosis, it felt like my whole world came crashing down. "I attempted to work regular jobs, including positions in call centers, but the symptoms of MS proved too challenging for my body. "Today, I am an avid DJ and have turned that passion into my main source of income and a lifeline.' He said his children have made living with the disease easier as they constantly support and encourage him. He explained that medical costs have been mounting, which has become challenging for him and his family. 'My medical aid costs around R5 500 per month, not including the additional medication I need. 'Over the years, I've been on various treatments, but due to not being able to afford comprehensive medical aid earlier, I had to rely on state hospitals. 'Unfortunately, they don't have access to the more effective disease-modifying therapies, and during that time, my condition progressed. 'As a result, I now have secondary progressive MS. There's currently no cure or medication that can reverse the neurological damage caused by MS. 'I'm now on Ocrevus, and each infusion costs approximately R30 000. "I receive these infusions two to three times a year. It's not only been a massive financial burden, but also a constant battle to get my medical aid to cover the costs of this critical treatment.' Williams said the disease has been debilitating but that his music kept his spirits alive. His wife, Liesel, who has started a Backbuddy account for him, aims to raise R150 000 to foot medical bills. 'DJ Scoob SA has played alongside some of the city's most well-known DJs and lit up dance floors at top nightclubs across the Mother City. His sets are electric, his energy infectious, and his love for music undeniable. "It's not just a career for him; it's a lifeline. His music is how he expresses himself, stays connected to the world, and earns an income. 'DJ Scoob SA is currently receiving Ocrevus, one of the few treatments that can slow the progression of MS. However, the cost of Ocrevus in South Africa is extremely high and not fully covered by medical aid. Each dose is a massive financial burden, but without it, his condition will only worsen." For more information follow DJ Scoob SA's BackaBuddy page on Cape Argus

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