How am I going to pay for this?

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.