Congress nearly came to blows in the final months of 2006 over who should get what part of the HIV money doled out every year through the Ryan White CARE Act. Lawmakers finally OK’d an annual $2.1 billion for three years—but our heads were spinning. What exactly is Ryan White, and why should we care? Frank Oldham, executive director of the National Association of People With AIDS (NAPWA), helped us sort it out.

1. What’s the Ryan White CARE Act?
In the 1980s, a kid from Indiana named Ryan White helped spark a national discussion about HIV when he was kicked out of his seventh grade class for having AIDS. In 1990, the year of White’s death, Congress signed the Ryan White Comprehensive AIDS Resources Emergency (Ryan White CARE) Act to stanch the growing health care crisis with federal dollars. “In some poor areas, they really don’t have the services to give people the best care they need,” says Oldham. “Ryan White money is a way to make up for that.”

2.  Who gets this money?
People with HIV or AIDS who don’t have health insurance at all or whose coverage doesn’t pay for the care they need.

3.  How is Ryan White different from Medicare and Medicaid? What about ADAP?

•    Medicare provides health insurance to HIV positive people who are too disabled to work (as well as to old people of either status).This program accounts for about 25% of federal spending on HIV and AIDS.

•    Medicaid is a health care program for low-income people who meet certain requirements, such as being elderly, a mother of small children or disabled by HIV.

•    AIDS Drug Assistance Program (ADAP) is the portion of Ryan White money (about one-third) that gets HIV drugs to people who can’t afford them otherwise (except for the growing number on waiting lists).

4.   Who distributes this money?
Cities, states and private organizations channel Ryan White funds to local health care providers. State governments generally supplement it with spending of their own.

5. How do the feds decide who gets what?
Cities and states receive grants according to an estimate of the number of people with HIV in their areas. But people can apply for supplemental funds based on “severe need.”

6. So some states get more money than others?
Yes. That’s what all the fuss was about last year when senators from New York and New Jersey withheld their Ryan White votes to protest a move to transfer funding to some Southern states (until finally agreeing to put off that fight for another three years).

7. But isn’t the demand for treatment rising?
Yes, and it’s expected to rise further as states begin to implement new Centers for Disease Control (CDC) recommendations that HIV testing become a routine part of health care. Forty thousand Americans test positive annually; the new drive could mean thousands more HIV diagnoses. Philadelphia is among many cities already feeling the gap between services and need.

8. What about those people dying in South Carolina?
Four people on the state’s extra-long ADAP waiting list have reportedly died due to lack of treatment.
 
9. The solution?
“It sounds a little naive to say, ‘Well, we need more money.’ But that’s what’s needed,” says Oldham. “Now the question is what extra money can go into this bill through [stopgap] appropriations”—the extra spending Congress must decide on by October of each year.

10. Is approving the Ryan White CARE Act for just three years better or worse than the usual five-year plan?
It means Congress will get back sooner to the business of designating AIDS money—which could be a good thing. But the state-to-state tug of war is expected to continue, especially if lawmakers can’t put together a bigger budget.