By Kate Santich
Tuesday, November 2, 2010; 10:07 PM
Edward Hensley was a well-to-do executive running a specialty pharmacy company in Orlando when he met a patient who would change his life.
The patient had cancer in her bone marrow, and her doctor had just prescribed a drug that might keep the disease at bay for years. Even though the woman had insurance, the drug would cost her $4,000 every month out of pocket.
"She told me, 'I don't even want to tell my husband about this because we can't afford it, and I don't want him selling everything to try to buy it. I'll just say the doctor said there was no hope.' It broke my heart," Hensley recalled.
Though he was able to find the patient some financial aid, Hensley wanted to do more. He vowed that, if ever he had the means, he would start a nonprofit to help others in similar straits.
Five years later, he has kept his word. Early this year, Hensley, 45, and business partner Jeff Spafford, 44, launched the Assistance Fund, a national charity that covers pricey prescription-drug costs for those who have insurance but can't afford their co-pay, the portion of the cost they must cover themselves. In many cases, those co-pays run from several hundred to several thousand dollars per month.
While drug companies typically have their own patient-assistance programs for the uninsured, options for the insured are more limited.
"There is a great need for programs like this," said Marc Steinberg, deputy director of health policy for Families USA, a health care consumer-advocacy group. "Even with insurance, the patient share can be significant, especially as new biologic drugs come on the market. They can do amazing things, but they are extraordinarily expensive."
Biologics - unlike chemical drugs - are made from human, animal or microorganism sources, a process that tends to drive their cost dramatically higher. To shield themselves, insurance companies in recent years have increased out-of-pocket costs for these drugs, often requiring patients to pay a percentage of the total instead of a flat co-pay.
"Ten percent of a $100 medication at Walgreens is 10 bucks," Hensley said. "No big deal, right? But 10 percent of a $3,000 med is $300 - and you'll be paying that every month. That's where you may have to start making some decisions about which bills you're going to pay and which you're not."
The Assistance Fund helps patients who earn up to seven times the federal poverty standard - income of $22,050 for a family of four - so even those who are solidly middle-class can qualify. And unlike other programs that can take more than a month to approve aid, The Assistance Fund can approve an application within hours.
Already, Hensley and Spafford have raised $20 million in donations - mostly from large corporations, including drug manufacturers - and are assisting 3,000 patients across the country.
Deborah Huffman, a 44-year-old office worker from Monroe, N.C., is one of them. Diagnosed with multiple sclerosis nearly 20 years ago, the illness has left her unable to work full time, and the financial stress pushed her marriage to the breaking point. Without the help from Hensley and Spafford, she would not be able to afford the MS drug Copaxone, which costs her $433 a month out of pocket.
Hensley said up to 90 percent of his charity's patients are Medicare recipients, either seniors or the disabled.
Rose Griffin, a 68-year-old Orlando resident, is both. With high blood pressure, diabetes, a heart condition and MS, Griffin takes five medications, including Copaxone, and covers the co-pay for four of them.
"I'm on Social Security," Griffin said. "That's all I have. When my doctor prescribed the Copaxone, there was no way I could afford it. Then he told me about this fund."
The drug, she said, has helped her maintain her balance and ability to walk.
Steinberg said the new Patient Protection and Affordable Care Act will ease some prescription cost burdens by slowly closing the Medicare Part D coverage gap, for instance, and setting out-of-pocket limits for private health insurance plans. But it won't erase the problem altogether, particularly as pharmaceutical companies continue to develop new therapies for complex conditions.
As for Hensley and Spafford, they plan to double - or even triple - the number of patients enrolled in their fund by next year.
"We truly never thought we would be able to raise the kind of money we have so quickly," Hensley said. "Jeff and I were actually able to start paying ourselves a salary in September after working on this for over a year.
"It has been sort of our way of giving back to an industry that was very, very good to us."