After talking to your doctor, support group and loved ones, you’ve decided to start HIV medications. Withdrawing $2,000 from the bank, you head for the drugstore... right. If paying out-of-pocket isn’t an option, here are some ways to help. Each program (and in some cases, each state) has a different formulary or list of covered drugs. Qualifying criteria vary. Think of getting your meds as a board game: Strategy is important.
Insurance coverage: Starting this July, a new federal law will prohibit small employers (two to 50 employees) from denying coverage because of an employee’s state of health. But large and self-insured employers are exempt from this ban. Some PWAs covered at work are afraid to use their coverage of services or drugs, but one should note that the Americans with Disabilities Act includes a ban on HIV-related job discrimination. Check your policy for a separate drug deductible. If you are self- or unemployed, don’t assume coverage is impossible. New York and New Jersey outlaw all health insurance discrimination by health status. Most other states directly offer guaranteed-issue or high-risk coverage for people with chronic illnesses, forcing insurers to take a few each month. Coverage is minimal, but might include prescriptions. Call your state insurance department for information.
Health maintenance organizations (HMOs): HMOs often have more-limited prescription coverage than regular insurance plans. HMOs also restrict how many drugs they will cover (for example, two drugs of the three-drug cocktail) or when you can get them (for example, 3TC only after failing d4T). Refused? File grievances with your HMO and complaints with the state insurance department. Having your doctor advocate for you and supplying articles from medical journals may bolster your case.
AIDS Drug Assistance Programs (ADAPs): These are federally funded, state-administered programs for the under- and uninsured. You must be HIV positive, a state resident and meet your state’s income and assets limits. The number of drugs offered varies. In most states, undocumented immigrants are eligible. In some states, you may still qualify even if you have health insurance or receive the type of Medicaid that requires a “spend-down.” If you fall into one of these groups, use ADAP for drugs your insurance doesn’t cover. ADAP programs are not guaranteed by law (unlike Medicaid/Medicare), so if your state runs out of money before year’s end, you could be stranded without those medications.
Medicare: This federal program is for those above age 65 or receiving Supplemental Security Income (SSI) or Social Security Disability (SSD). Twenty-nine months after you apply for SSI or SSD, you receive Medicare Part A (covering hospital care) and the option to pay $50 or more a month for Medicare Part B (covering doctor visits). But these plans cover very few prescriptions: Infusion drugs -- only if you’re bed-bound or must be doctor-observed while infusing -- and four cancer drugs; plus, payment can take two to three years. In some areas, Medicare recipients can enroll in HMOs providing complete drug coverage, but you may be sacrificing high-quality care.
Medicare supplemental insurance (Medigap or MedSup): These private plans offer coverage to supplement Medicare Part B (see above). Only three types of plans (H, I and J) cover any prescriptions. Coverage is limited to 50 percent of prescriptions, with a $250 deductible and annual limits of either $1,250 or $3,000. Only New York, New Jersey and Connecticut require offering coverage to people on Medicare through disability. In many states, this coverage is not available -- ask your state insurance department.
Medicaid: Qualifications vary for this joint state/federal program, but all states require extremely low income levels and minimal assets. Drugs covered vary; those states using managed care may cover fewer drugs; six states impose monthly prescription limits. Under federal welfare reform, Medicaid is only available to citizens or immigrants who have worked for 10 years in this country. States may offer Medicaid to pre-1996 immigrants, but that will happen only through political pressure. Call your state’s Medicaid program to ask what drugs are covered.
Veterans Administration (VA) benefits: Vets may be eligible for VA benefits, which include prescription coverage. However, in most states this will permanently disqualify you for Medicaid and limit you to care in VA hospitals. Check your state’s Medicaid drug list first, and weigh your choice carefully.
Patient drug-assistance programs: These are run by the drug companies, but not all drugs are available, and qualifications differ. Most provide drugs only if you have no other way of paying: You may qualify if you used up this year’s HMO prescription coverage, or if your VA or Medicaid program does not cover the drug you need. But some companies won’t supply a drug if your state’s ADAP or Medicaid formulary has excluded it. Some programs will supply the drug to undocumented immigrants, but most won’t. The programs generally provide applications and detailed information only to doctors. Many clinic physicians can’t or won’t do the time-consuming paperwork -- but ask anyway and be persistent. Repeated applications are required if more than a limited supply is needed.
Compassionate use/expanded access: Pharmaceutical companies may provide experimental drugs directly to your doctor. Originally designed to help people who had failed all approved drugs (compassionate use) or who lived too far from the nearest clinical trial (expanded access), these are now almost interchangeable terms. Some compassionate-use programs dictate doses and require detailed medical monitoring. Using these programs requires a huge amount of paperwork from your doctor.
Clinical trials: These experiments test new drugs to see if they actually work. Each trial has different criteria for how healthy or ill you can be to participate. Depending on the trial, you may get exactly what you need, or a different medication, a lower dose, a higher dose or a placebo (sugar pill). Testing the drug is the priority, not providing health care. But this can be an excellent way to get a new drug before it’s widely available.
PWA buyers clubs: These grass-roots organizations provide drugs not approved in this country, alternative therapies and high-quality supplements. Many of these are effective treatments approved in other countries. It is fully legal to buy drugs through buyers clubs (some drugs require prescriptions). Most clubs take mail orders. n
For lists of the various programs, contact the AIDS Treatment Data Network at 800.734.7104. A list of PWA buyers clubs is available from PWA Health Group at 212.255.0520.