To: Wes Streeting, Secretary of State for Health and Social Care
New Treatments for Myasthenia Gravis
Please contact NICE to see if there is anything from a government perspective that can be done to influence the ongoing appraisals.
Emphasise the importance of the patient voice in this process, and the understanding that myasthenia gravis can have a significant impact on a patient's life.
Promote the need for new treatments that target myasthenia gravis, compared to the blanket standard therapies currently used.
Promote the need for new treatments that target myasthenia gravis, compared to the blanket standard therapies currently used.
Why is this important?
Myasthenia gravis is a chronic and incurable autoimmune disease. It can be a severe and life-threatening condition that significantly impacts a patient's quality of life. Myasthenia gravis causes muscle weakness that affects mobility and day-to-day function of many patients, and is currently treated by 'blanket' approaches such as steroids and immunosuppression, which come with their own side effect burden.
It appears UK myasthenic patients are being left behind with treatment for this chronic, disabling, and, in some cases, life limiting disease. Patients in many other countries of the world have access to one or more of these newer therapies. These countries include USA, many countries in Europe (France, Germany, Spain, Greece, Italy, Switzerland, Austria, Belgium, Lithuania, Luxembourg, Poland, Romania, Slovenia), the Americas (Argentina Brazil, Canada, Mexico), China, Egypt, Israel, Japan, Oman, Saudi Arabia, South Korea, Taiwan, Turkey, and United Arab Emirates. The UK appears to stand out as a country in which patients with myasthenia have no access to treatments that can revolutionise their lives.
Patients in the UK are still being treated with the older broad-acting treatments which often involve the long-term use of steroids, with their often lifechanging side effects, or other expensive treatments such as IVIg or plasma exchange. The quality of life for many myasthenic patients is poor, their ability to earn a living can be compromised and they live in fear of a myasthenic crisis which will involve a hospital stay and can be life threatening.
