Topic

multiple sclerosis

6 petitions

Update posted 3 weeks 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
51,634 supporters
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
2,496 supporters
Started 3 months ago

Petition to Hoffmann–La Roche, F. Hoffmann - La Roche AG, Roche Holding AG, European Commission, Food and Drug Administration

Approve OCREVUS (Ocrelizumab) medication in Romania

Dear members of F. Hoffmann-La Roche AG,  My name is Cristina-Maria Drăgănescu, I am a multiple sclerosis patient (relapsing remitting form) since 2003. Multiple sclerosis has not stopped me from pursuing my dreams and finishing my education, and even more, I’ve written two books on MS to help others cope with this condition. I am writing on behalf of 10.000 patients suffering of various forms of multiple sclerosis, in Romania, who need the medication OCREVUS (ocrelizumab). I am addressing this quest to you as I understand, you have produced this medication and it has good results. In  Romania you would have a good market to sell it, you might consider this fact. Not to mention the great need for it.   Here in Romania, due to the lack of interest in people suffering from multiple sclerosis, the treatment is scarce, patients are basically forced to accept any form of treatment if that even is available for them, many still remaining without treatment.  Furthermore, the discrimination is at a breaking point as many relapsing remitting patients who are still on the working field are forced to hide their diagnosis from their co-workers, not to mention their boss. Multiple sclerosis is regarded as a stigma, and you are being looked down at, if you dare mention you are sick or suffering from a neurological condition. It looks like John Prine was right with his song "Some Humans Ain't Human".  What is available for MS Romanian patients at this moment, up to my knowledge are the following treatments: Interferon with Avonex, Rebif, Betaferon, Copaxone, Tysabri (Natalizumab), and Aubagio (very few have access). Our request, as a large group of people suffering from relapsing remitting MS and secondary progressive MS all around Romania, would be that you would release OCREVUS (ocrelizumab) medication in Romania and in Europe, too.  People here are struggling  lo live a "normal" life and face their demons, enduring whatever MS has prepared for them, everyday bringing a new challenge.  We definetly need OCREVUS treatment here in Romania! IT IS AN EMERGECY for many patients who can't stand MS symptoms and Interferon medication anymore.   Respectfully, Cristina-Maria Drăgănescu TRADUCERE PETITIE:  Dragi membri ai F.Hoffman-La Roche AG, Mă numesc Cristina-Maria Drăgănescu, şi sunt o pacientă cu scleroză multiplă (forma recurent remisivă) din 2003. Scleroza multiplă un m-a oprit să îmi termin educaţia (studiile), şi chiar mai mult, am scris doua cărţi despre SM pentru a-I ajuta pe alţii să facă faţă acestei maladii. Scriu în numele a 10.000 de pacienţi de scleroză multiplă din România, care suferă de diverse forme de SM şî au nevoie de OCREVUS (ocrelizumab). Vă adresez această cerere dvs, întrucât înţeleg că aţi produs acest medicament care dă rezultate foarte bune. În România aţi avea o piaţă bună pentru comercializarea lui, aţi putea lua în considerare acest fapt. Ca să un mai menţionez de marea nevoie pentru el. Aici în România, datorită lipsei de interes pentru oamenii care suferă de scleroză multiplă, tratamentul este rar (puţin, greu accesibil), pacienţii sunt practic obligaţi să accepte orice formă de tratament disponibilă pentru ei, mulţi rămânând fără tratament. Mai mult, discriminarea aste la un punct culminant întrucât mulţi pacienţi cu sm recurent remisivă aflaţi în câmpul muncii sunt nevoiţi să îşi ascundă diagnosticul de colegii lor, şi bineînţeles de şeful lor. Scleroza multiplă este privită ca un stigmat, eşti privit ca un inferior, dacă îndrăzneşti să menţionezi că sueri de vreo boală neurologică. Se pare că John Prine a avut dreptate cu versurile lui “ unii oameni nu sunt umani”. Ce este disponibil pentru pacienţii români cu scleroză multiplă în momentul de faţă sunt, după cunoştinţele mele, următoarele tratamente: Interferon with Avonex, Rebif, Betaferon, Copaxone, Tysabri (Natalizumab), şi Aubagio (foarte puţini au acces). Cererea noastră, ca un grup mare de oameni din toată România, suferind de scleroză multiplă recurent remisivă şi scleroză multiplă secundar progresivă, este ca să ne daţi accesul la tratamentul cu OCREVUS (ocrelizumab). Oamenii aici se luptăpentru a duce o viaţă “normală” şi îşi confruntă demonii, îndurând ce provocări le-a pregătit SM pentru ei în fiecare zi. Cu siguranţă avem nevoie de tratamentul OCREVUS aici IN România! Este o urgenţă pentru mulţi pacienţi care un mai pot îndura simptomele SM şi medicaţia cu interferon. Cu respect, Cristina-Maria Drăgănescu  

Cristina-Maria Draganescu
550 supporters