Topic

multiple sclerosis

5 petitions

Update posted 1 month ago

Petition to FDA , NIH , MHRA , World Health Organization, European Medicines Agency

Stop the Damage and Find a Cure for Victims of MRI Contrast Toxicity

Thirty million magnetic resonance imaging (MRI) scans are performed each year in the US alone, and many more worldwide. One of every three patients undergoing an MRI scan is injected with the contrast agent, gadolinium. This helps “light up” the results more clearly for the radiologists. Gadolinium is a highly-toxic rare metal. It has no place in the human body. When gadolinium was introduced as a contrast agent, it was prepared in such a way that it was thought to leave the body naturally within 3 days of the MRI scan. Scientific research carried out in the past decade has clearly disproved this. Gadolinium is retained in the body for many years, possibly a lifetime, and concentrates specifically in brain and bones. Tens of millions of patients are exposed to this known toxic substance every year, when they undergo an MRI scan. Many of these patients are young children, whose bodies are still developing. The long-term harm of gadolinium accumulation has not yet been quantified. However, there are already many victims of gadolinium poisoning who suffer painful and crippling symptoms. Recent studies show that gadolinium contrast is used far too liberally and is not necessary in many cases.   We must voice our concerns to the FDA, the World Health Organization and the medical community. We ask the FDA, the World Health Organization and health authorities worldwide to: Warn physicians and patients about the risks of gadolinium. Restrict gadolinium use only to cases where the benefits outweigh the risks. Invest in rapid development of safe gadolinium alternatives. Sponsor large studies of gadolinium toxicity in patients who have undergone MRI scans. Promote the development of effective treatments to remove toxic gadolinium from patients affected by it.

MedInsight Research Institute
5,911 supporters
Update posted 5 months ago

Petition to Kevin Brady, U.S. House of Representatives, Mike Enzi, Bernie Sanders

HELP PEOPLE WITH RARE DISEASES GET THEIR LIFE-SAVING MEDICATIONS

I am one of about 800,000 people in the U.S. who suffer from  multiple sclerosis, a disabling progressive disease which affects the central nervous system.  Other rare diseases include ALS (Lou Gehrig's Disease), muscular dystrophy, lupus and sarcoidosis.  I lost my career to MS, as I have become totally disabled.   There is no cure for MS, but the disease can be managed.  There are currently 13 or so FDA-recognized disease modifying therapy medications, and even less for relapses. Treatment for these diseases is very costly. My daily  disease modifying therapy medication costs over $6,500 per month, and the relapse medication costs $40,000 per treatment.  This far exceeds my and my husband's total income, as my husband is totally disabled from a stroke.  Obviously, very few people can afford these medications, especially when they are fully disabled. There is help available; the drug companies which make these specialty drugs have financial assistance programs that allow the patient to receive the drugs at low cost or for free. HOWEVER, PEOPLE WHO ARE ON GOVERNMENT-ASSISTEED PRESCRIPTION PLANS SUCH AS MEDICARE PART D OR MEDICAID CANNOT RECEIVE THIS HELP.  A provision of the Social Security Act designed to prevent Medicare fraud also makes it a felony for a drug company to directly assist a patient financially if that patient has a government-assisted prescription plan, such as Medicare Part D or Medicaid. YOU CAN HELP!  PLEASE LET CONGRESS KNOW THAT IT MUST AMEND THE SOCIAL SECURITY ACT TO PERMIT DRUG COMPANIES TO PROVIDE PATIENTS WITH RARE DISEASES WITH DIRECT FINANCIAL ASSISTANCE SO THAT THEY CAN GET THEIR LIFE-SAVING MEDICATION!!!

Susan Dolin
51,841 supporters
Started 1 year ago

Petition to Food and Drug Administration

Tell the FDA to Approve Stem Cell Transplant for CIDP, MS, & 21 Other Autoimmune Diseases

HSCT (Hematopoietic Stem Cell Transplant) is a proven treatment to halt the progression of many debilitating autoimmune diseases, like MS (Multiple Sclerosis) & CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) and in most cases, reverses the menacing symptoms patients suffer from. HSCT has been successfully used worldwide for over 14 years and clinical trials have recently been completed in the United States. Unfortunately, the FDA hasn't approved HSCT as a "standard" form of treatment, so most health insurance companies and Medicare are refusing to pay for it. The sooner the FDA approves HSCT as a standard therapy, the sooner people suffering needlessly from these horrible autoimmune diseases, can be cured.  HSCT is expensive, but it is a one time cost to insurance companies. Instead, they are paying out hundreds of thousands of dollars more each year, for approved prescription medications and IVIG infusion therapies. Let's convince the FDA to speed up the approval process for HSCT, by signing this petition and helping millions of people, suffering from autoimmune diseases like MS & CIDP. https://www.the-irf.org/autoimmunity/autoimmunity.aspx https://www.the-irf.org/autoimmunity/what-is-hematopoietic-stem-cell-transplantation.aspx https://www.the-irf.org/autoimmunity/hospitals-performing-hsct.aspx http://www.stemcellresearchfacts.org/dr-richard-burt/ http://www.hsctstopsms.com/what-is-hsct/      

Laura Filler
13,956 supporters