MSCAN ACTION ALERT!

We need your help.

We know that the out of pocket costs for MS prescription drugs can overwhelm family budgets and affect a patient’s adherence to these critical medications. It has been an issue at the forefront of the advocacy efforts of the National Multiple Sclerosis Society across the country. This year in California, we are delighted that Assembly member Fiona Ma (D-San Francisco) has introduced Assembly Bill 310 to cap the out of pocket costs for very expensive specialty drugs, including the MS injectible medications, to assure that patients can afford and access their prescription drugs.

We will be working closely with Assembly member Ma’s office to ensure this legislation’s success. The first step toward building our case for the need to cap the out of pocket costs for specialty drugs is to identify those MS patients that have been burdened by this problem. In moving this bill through the legislative process we will eventually need people’s stories, as well as asking individuals who have been affected by this problem to appear at press conferences and hearings. If you or someone in your family with MS have difficulty meeting the out of pocket costs for your MS drugs, please let me know as soon as possible.

We are very excited at the prospect of passing legislation that will reduce your out of pocket costs for these very expensive MS drugs. But, your help is critical in this effort.

If you have a story to tell, email Cheryl Roberto-Lvovsky, Advocacy Manager, at cheryl.lvovsky@nmss.org.

I look forward to hearing from you.

Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at http://www.nationalmssociety.org/ or 1-800-344-4867.

Our postal address is:
National Multiple Sclerosis Society
733 Third Avenue
New York, New York 10017

  1. #1 by adjmediator on March 28, 2011 - 2:00 am

    Dear Cheryl
    Thank you for your email and all the advocacy work you and your team do for people with Multiple Sclerosis, like myself.
    I was diagnosed on March 15, 1999 when I experienced optical neuritis two days before my first son was born, 11/24/98. After weeks of blurred and double vision and a plethora of tests and second and third opinions, I was finally diagnosed on the Ides of March, 1999.
    My physical and mental struggles with the disease is no different, better or worse than anyone elses. I have good days and bad days. To date, thankfully, I have no permanent life limiting disability but I do battle symptoms on a daily basis.
    With regards to the ridiculous price of the medication, I am pleased to share my struggles. I am self employed. My company is called Davis Risk Services (DRS). We are a third party administrator and independent adjusters specializing with medical malpractice and elder abuse. I am also a private mediator. I truly have a small business. Including myself, I employ four people. One of them is my partner and mother, Rhonda Davis. 50% of my company has MS. One of our non-Davis’ also has the disease.
    My mother and I began DRS as I was out of a job and she was getting tired of working for someone else. One of the benefits of being self-employed and having a company with less than 100 employees, we were eligible for health insurance in an assigned risk pool. With having the disease, I of course needed good insurance to pay for all the doctor’s visits, MRI’s and Avonex, the medication I was on for ten years. In 1999 when we began DRS, I think our monthly premium was about $1,800/month and I was responsible for 20% of charges. Avonex is $1,200/month and 20% of that with a $1,800 premium was very steep. But we had no choice.
    The next year we hired our first employee, who has MS. Shortly after that, we hired her daughter and we all have been together for about nine years. Fast forward to today, with four employees, three of whom require health insurance, two of whom must have the coverage needed to cover all the MS treatments and medications, the cost have spiraled out of control.
    The company’s health insurance premium is now $3,700/month and I have a $4,000.00 deductible that must be met before the insurance company kicks in. Ironically, since the medication is so expensive, the deductible gets eaten up quickly.
    I know I am more fortunate than others in that I have insurance to cover the costs, but the costs have placed us in a very difficult financial situation. We have almost had to close the company several times but took loans against our homes to keep it alive just to keep the insurance. My family has gone through a debt consolidation and we are currently finalizing a home loan modification. It’s March 23, 2011 and I had to take me and my mother off payroll for the end of the month as I had to pay the health insurance, so we again sacrificed our income.
    Is the high cost of treatment the only reason for our financial situation?…probably not. But having to pay $44,400.00 a year in insurance premiums and an additional $4,000.00 deductible doesn’t make it any easier.
    Please feel free to contact me should you wish to discuss further.

    Sincerely,
    Seth J. Davis

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