So here’s a story of a newly-diagnosed patient with multiple sclerosis, who has private insurance coverage, and who needs help paying for one of the recommended disease-modifying drugs, specifically Copaxone.
"Congratulations You qualify for a 50% award!" says the woman from Shared Solutions.
What does that mean…50%?
"NORD (National Organization for Rare Disorders, Inc.) reviewed your application and determined that you are eligible to receive 50% of a year’s supply of Copaxone for free."
Does that mean I have to pay 50% of the cost each month?
"No, it says here that you will get 6 months of Copaxone, will be responsible for paying shipping & handling ($100 every 3 months), and will be personally responsible for the other 6 months. That gives you time to save up for it."
But I can’t AFFORD that!!
"If your financial situation changes during the year, you can appeal for additional help from NORD. I’d suggest doing that in the spring."
It was the Saturday after Thanksgiving and I had finally received the official MS diagnosis on October 15, 2005.
Why would an MS patient who has insurance and prescription coverage need help paying for medication?
The answer can be found in - Health Insurance Coverage Protects from Catastrophic Health Costs (!?!)
The application required lots of documentation: last three paystubs, most recent federal tax return, all bank account and brokerage statements for the most recent three months, a copy of your insurance card, a completed and signed application which requires details of your household, all assets (including checking/savings accounts, retirement, pension, investments, home, car, etc.), insurance coverage, doctor’s info, monthly income, and monthly expenses.
Since I am self-employed, I have no paystubs and had to use the 2004 tax return as proof of income. However, this was before I had begun to deduct for things like ‘deferred earnings’ or high medical expenses. At that time, I was trying to maximize my AGI (adjusted gross income), maximize contributions to Social Security, and show great enough earning power to qualify for a mortgage someday.
So with an AGI of ~$33,000, no long-term or credit card debt, and about $50,000 in savings ear-marked for retirement, NORD offered to cover $10,000 for Copaxone and thought I could afford the other $10,000.
I immediately consulted a financial advisor who helped me to set up ‘official’ retirement accounts and to examine my tax options. After taking advantage of IRA contributions and other deductions, my AGI dropped to $27,000.
After my appeal to NORD was denied, I spoke with the woman in charge of appeals. She informed me that I had only qualified for 27% award and that they had been very generous to provide 50%. Even with an income of 275% FPL, I had too little debt and too much assets.
Following many frustrating and fearful tears, I began the quest to find other assistance programs. Calls to the NMSS, MSF, and MSAA were fruitless. I contacted the Co-Pay Relief Fund (CRF) and Patient Services Incorporated (PSI), only to learn that both of these organizations had closed their multiple sclerosis programs due to insufficient funds.
Then I contacted the Patient Access Network Foundation (PANF) who rejected my application because I had earned $5000 too much and was told to reapply the following year.
When I completed my 2006 taxes the following February, I had an AGI of $19,400 and more than $15,000 in medical expenses for the year, even after being given four months of Copaxone by my MS nurse and after receiving $1000 worth of Provigil through a county program.
I had finally found the threshold for 100% Copaxone assistance from NORD. I had only needed to decrease my income to below 200% FPL (federal poverty level). NORD offered to cover the next 12 months, this time with only a $15 fee every three months.
Stuck behind a rock and a hard place.
Maximize earnings, have insurance coverage, and spend 1/3 of my adjusted gross income on ONE medication after receiving assistance.
Drastically limit earnings, keep insurance coverage, and finally qualify for full prescription assistance.
Or give up, go on Disability, pay Medicare premiums, only to face the Donut Hole each year with Medicare Part D Drug Coverage.
What would you choose? How do you pay for your MS medications? I’d really like to know. Thanks.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.