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.

Friday, August 6, 2010

Federal Focus - August 2010

Support the Part D Off-label Prescription Parity Act
The National MS Society worked closely with Representatives Mary Jo Kilroy (OH-15) and William Thornberry (TX-13), noted clinicians, and other health organizations to draft, name, and introduce legislation that would help people living with MS and other chronic conditions access safe and effective treatment. The Part D Off-label Prescription Parity Act (H.R. 5732) was introduced on July 14 and would allow Medicare Part D carriers to cover the "off-label" use of drugs prescribed to people living with chronic diseases, including MS, when its use is supported by peer-reviewed medical literature. Doctors, based on existing medical literature and their professional judgment, routinely prescribe medications for "off-label" uses, meaning the drugs are used for purposes other than those approved by the Food and Drug Administration (FDA).

Currently, many people on Medicare who live with MS and other chronic conditions are unable to access some safe and effective medications because of inconsistent Medicare policies. Medicare Part D prohibits coverage of drugs for disorders other than those specifically approved by the FDA. However, exceptions are made for those individuals living with cancer and other Medicare programs provide coverage of off label indications. H.R. 5732 would bring parity to Medicare policy and allow people living with MS to access a variety of prescription drugs such as Modafinil (aka Provigil). Modafinil is a drug traditionally used to treat narcolepsy but that has shown significant improvement in relieving fatigue in people living with MS.

This inequity denies people living with MS and other chronic conditions medically necessary treatment that could vastly improve their quality of life. Click here to e-mail your Representative and ask him/her to cosponsor the Part D Off-label Prescription Parity Act (H.R. 5732) so that this inequity is resolved.

Federal Appropriations Update
Before Congress adjourned for August recess, progress was made on key appropriations bills that determine funding levels for programs, research, and services for people living with MS.

The Senate Labor-Health and Human Service (L-HHS) bill provides a $1 billion increase totaling $32 billion for NIH-the nation's premiere medical research agency that conducts a majority of MS-related research and an increase of nearly $1 billion totaling $12.4 billion for the Social Security Administration. The Senate bill also includes $50 million to create the Cures Acceleration Network (CAN), a program established by the new health care reform law that will help speed the translation and application of discoveries that have shown signs of success at the laboratory level but have not advanced far enough to attract significant investments from the private sector.

The Society continues to advocate for two of its 2010 priority issues- robust funding for the Lifespan Respite program and increased funding for MS research in the Congressionally Directed Medical Research (CDMRP) program. Due to continued work of MS activists, the Senate has provided a substantial increase for the Lifespan Respite program and early indications are positive in terms of funding for MS research in the CDMRP. Please stay tuned for updates as the federal appropriations process continues. MS activists must remain engaged so that these vital programs receive the funding they need.

Senate Votes to Extend Federal Medicaid Assistance to States
The Senate voted to extend federal Medicaid assistance to states for an additional six months-through June 30, 2011. This federal Medicaid assistance was originally enacted as part of the American Recovery and Reinvestment Act of 2009 to help states avoid having to cut vital health services and to help save and create jobs. The federal medical assistance percentage (FMAP) was increased by at least 6.2 percentage points. This increase was to end December 31, 2010-but the recently passed Senate bill H.R. 1586 would phase this assistance down through the first and second quarters of 2011. This legislation still must be passed by the House of Representatives and while the House has already adjourned for August recess, Speaker Nancy Pelosi (CA-8) has announced they will return to Washington next week to cast this important vote.

MS Activists Attend White House 20th Anniversary of the ADA Event
On July 26, five MS activists from around the country were invited to the White House to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA) being signed into law. The ADA established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities, guaranteeing equal opportunity for individuals living with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.

The invited MS activists were able to hear President Obama in his remarks give due credit to the grassroots origin of the historic law and about ongoing efforts to ensure that the ADA realizes its full potential. In conjunction with the anniversary, the Department of Justice issued regulations protecting disability-based discrimination and requiring all new buildings to be compliant with 2010 accessibility standards. President Obama also signed an Executive Order that establishes the federal government as a model employer of individuals living with disabilities-with the goals of better recruitment, training, and retention. To read more and view pictures, click here.


Social Security Disability Benefits Guidebooks Updated
If you have multiple sclerosis (MS) and are unable to work due to an MS-related disability and/or other conditions, you might be entitled to Social Security Disability Insurance (SSDI) benefits or Supplemental Security Income (SSI) benefits. To be eligible for disability benefits, a person must be unable to engage in substantial gainful activity (SGA). Every year, the SGA level is adjusted--typically increased in conjunction with the national average wage index. The Society has updated its online versions of the SSDI Guidebooks for People Living with MS and for Professionals with the 2010 SGA level and with updated information about COBRA and the 24-month wait to Medicare eligibility for persons with disabilities. Please refer to these online, updated versions when necessary.



To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
Posted by Steve at Friday, August 06, 2010

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About Me

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North Grafton, Massachusetts, United States
Well-educated, disabled at this point with Multiple Sclerosis. I am very glad that I was able to do the things that I have been able to do over the years. had to change the picture, this one's more realistic.