Multiple Sclerosis: Federal Focus - August 2013

Current Treatments
BETASERON® (interferon beta-1b) is indicated for the treatment of relapsing forms of multiple sclerosis to reduce the frequency of clinical exacerbations. Patients with multiple sclerosis in whom efficacy has been demonstrated include patients who have experienced a first clinical episode and have MRI features consistent with multiple sclerosis

AVONEX® (Interferon beta-1a) is a 166 amino acid glycoprotein with a predicted molecular weight of approximately 22,500 daltons. It is produced by recombinant DNA technology using genetically engineered Chinese Hamster Ovary cells into which the human interferon beta gene has been introduced. The amino acid sequence of AVONEX® is identical to that of natural human interferon beta.

COPAXONE is the brand name for glatiramer acetate (formerly known as copolymer-1). Glatiramer acetate, the active ingredient of COPAXONE, consists of the acetate salts of synthetic polypeptides, containing four naturally occurring amino acids: L-glutamic acid, L-alanine, L-tyrosine, and L-lysine with an average molar fraction of 0.141, 0.427, 0.095, and 0.338, respectively. The average molecular weight of glatiramer acetate is 5,000 – 9,000 daltons. Glatiramer acetate is identified by specific antibodies.

Rebif® (interferon beta-1a) is a purified 166 amino acid glycoprotein with a molecular weight of approximately 22,500 daltons. It is produced by recombinant DNA technology using genetically engineered Chinese Hamster Ovary cells into which the human interferon beta gene has been introduced. The amino acid sequence of Rebif® is identical to that of natural fibroblast derived human interferon beta. Natural interferon beta and interferon beta-1a (Rebif®) are glycosylated with each containing a single N-linked complex carbohydrate moiety.

Tysabri is a monoclonal antibody that affects the actions of the body's immune system. Monoclonal antibodies are made to target and destroy only certain cells in the body. This may help to protect healthy cells from damage. Tysabri is used to treat relapsing forms of multiple sclerosis.

Gilenya™ is a new class of medication called a phingosine 1-phosphate receptormodulator, which is thought to act by retaining certain white blood cells (lympohcytes) in the lymph nodes, thereby preventing those cells from crossing the blood-brain barrier into the central nervous system (CNS). Preventing the entry of these cells into the CNS reduces inflammatory damage to nerve cells.

Early Symptoms
The most common early symptoms of MS include:
* Tingling * Numbness
* Loss of balance
* Weakness in one or more limbs
* Blurred or double vision

Less common symptoms of MS may include
* Slurred speech
* Sudden onset of paralysis
* Lack of coordination
* Cognitive difficulties

Listed above, the early symptoms. I tend to be a poster child for these. The symptoms that occur later on are too numerous just to list. There will be a link included that will get you to a site where these symptoms are listed and explained. Keep in mind that someone may have some of these or many of these, there is no way to tell.

Multiple sclerosis statistics show that approximately 250,000 to 350,000 people in the United States have been diagnosed with this disease. The life expectancy for people with multiple sclerosis is nearly the same as for those without MS. Because of this, multiple sclerosis statistics place the annual cost of MS in the United States in the billions of dollars. MS is five times more prevalent in temperate climates -- such as those found in the northern United States, Canada, and Europe -- than in tropical regions. Furthermore, the age of 15 seems to be significant in terms of risk for developing the disease. Some studies indicate that a person moving from a high-risk (temperate) to a low-risk (tropical) area before the age of 15 tends to adopt the risk (in this case, low) of the new area and vice versa. Other studies suggest that people moving after age 15 maintain the risk of the area where they grew up.

The National MS Society

Friday, August 2, 2013

Federal Focus - August 2013

Congress Heading Home for August Recess Congress has been busy wrapping up some items before members head back to their states for a month-long break. In addition to a Medicare-related bill, both the House and Senate have been working on annual funding bills that provide support for departments and programs important to people with MS including the National Institutes of Health (NIH). The start of the fiscal year (October 1) isn’t too far off and some already speculate that Congress will pass a Continuing Resolution to buy more time to complete the annual funding process. MS activists will be busy meeting with their members of Congress who are home for August recess to discuss our funding priorities for the year: the NIH, MS research funding through the Congressionally Directed Medical Research Programs (CDMRP) and the Food and Drug Administration (FDA). These visits are part of our year round advocacy to ensure that MS research is well funded and that the FDA has adequate resources to review and approve devices and new treatments for people with MS. If you are interested in attending August recess visits with members of Congress, contact your local Society chapter. International Rights Treaty Update Many of you have taken action urging your U.S. Senators to support the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD aims to create a more accessible world where Americans with disabilities—including veterans— have increased independence and equal rights to continue to work, serve, study, live or travel abroad. The Senate voted on the treaty in the 112th (last) Congress, but fell short of ratification. Because a new Congress began in January, the treaty has to start from the beginning and be approved by Committee before the full Senate can vote on it. The most recent indications are that the Senate Foreign Relations Committee may hold a hearing on the CRPD in September or October. Stay tuned for opportunities to take action and ensure your Senators’ support for the CRPD.

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