If you feel like you're playing a losing game when it comes to paying for health care treatment and prescriptions, you're not alone. An estimated 45 million Americans are uninsured, and at least 20% of HIVers fall into this category. Taking care of HIV can zap people's incomes. And poor health can cause many people to leave the workplace, putting them in an even more disadvantaged position. The Kaiser Family Foundation estimates that 46% of HIVers make less than $10,000 a year and that 63% are unemployed. Luckily, there are safety nets out there.
A federal- and state-funded health care program for the poor, Medicaid is the most important source of health insurance for Americans with HIV, supporting an estimated 44% of people in care. Because each state administers its own program, eligibility requirements and the benefits provided vary greatly. To qualify, your income and assets must be below a level set by each state'typically between 74% and 137% of the federal poverty level. (For 2005, total income must be $9,570 or less for an individual, somewhat higher in Hawaii and Alaska, to qualify for federal poverty status.) If your assets are too high, you may be able to 'spend down' until they are low enough.
Most HIVers qualify because they receive Supplementary Security Income from the Social Security Administration. Typically, you must be disabled or have an AIDS diagnosis (which counts as a disability) to qualify for SSI. However, you may be able to obtain a 'predisability waiver' to get around this requirement. Governments of Maine, Massachusetts, and Washington, D.C., have received federal approval to extend eligibility to nondisabled HIVers, though only Massachusetts's program is active.
Because of ongoing budget crises, many states have tightened their Medicaid allowances in recent years. Mississippi enacted a law that bars Medicaid beneficiaries from receiving reimbursement for more than two brand-name drugs, a particular problem for people on drug cocktails of three or more medications, but at the eleventh hour HIVers were exempted. Other states have enacted similar restrictions and may also limit your number of doctor visits or length of hospital stays. If your Medicaid program doesn't cover all your needs, you might be able to fill in the gaps if you are also eligible for Medicare or AIDS Drug Assistance Programs or by visiting a community health clinic or other provider that receives funding from federal Ryan White Act resources. Contact Medicaid at www.cms.hhs.gov or (877) 267-2323.
Similar to Medicaid, Medicare is also a publicly funded health insurance program. Americans 65 or older and people receiving Social Security Disability Insurance benefits qualify for coverage. About 19% of HIVers currently under care access Medicare, including 12% to 13% who are dually eligible for Medicaid and Medicare because they qualify for SSDI. If the Social Security Administration confirms you are disabled, there is a five-month wait before you receive SSDI payments, followed by a 24-month period before you can get Medicare. You may be eligible for COBRA benefits to bridge this gap.
You've probably heard that Medicare is going through some dramatic changes: Starting January 1 the program will offer a prescription drug benefit for the first time. You can either keep your Medicare plan and apply for an individual prescription drug coverage policy or switch to a Medicare Advantage Program, which is essentially a government-subsidized private health maintenance organization or preferred provider organization plan with drug benefits. By law, dually eligible Medicaid-Medicare recipients must shift their drug benefits from Medicaid to Medicare.
The bad news? The average premium for drug coverage will be $37 a month. Each year you will need to pay a $250 deductible before coverage kicks in. Medicare will then pay 75% of drug costs up to $2,250. After that, you encounter what's called the 'doughnut hole': You will be responsible for all drug costs between $2,250 and $5,100. Medicare pays 95% of all costs after $5,100.
While this may sound like a worse plan than what you have now, it does get better. Medicare's drug benefit promises to cover a wider variety of meds than many other public'and even private'sources of coverage. Also, anyone with an income below 150% of the federal poverty level, including all dually eligible Medicare-Medicaid recipients, qualifies for subsidies that will protect against many unexpected expenses. You must fill out an application for this extra help, though. Contact Social Security online at www.ssa.gov or call (800) 772-1213 for an application.
People with higher incomes who still find themselves in a financial pinch may have to rely on AIDS Drug Assistance Programs for coverage once they hit the doughnut hole; however, no one is sure yet how Medicare changes will relate to ADAPs.
If you are dually eligible, you will probably be enrolled in the drug program automatically. But don't just wait and see if it happens'make sure it does. All patients who want Medicare drug coverage by 2006 need to start looking into their options right away. Open enrollment begins November 15, and as long as you've been approved by December 31 your coverage will begin on January 1. Thereafter, new applicants will receive coverage on the first day of the month after they've received approval. Medicare drug discount cards you may have been using will expire permanently on May 15, 2006. Visit Medicare online at www.medicare.gov or call (800) 633-4227.
Private Health Insurance
Obtaining an affordable private insurance plan is nearly impossible for most HIVers because of a process called 'underwriting.' Unless you live in New York, New Jersey, Vermont, or Maine, when you apply for a private plan, the insurer will ask specifics about your health and charge you a monthly premium based on how expensive your health care is expected to be. Having HIV can cause your premium to skyrocket to several hundred dollars a month.
For people who do obtain private insurance, it's important to understand the three major types of coverage. A health maintenance organization offers a specific pool of doctors to choose from. If you want to see someone outside the network, you will have to pay out of your pocket. Preferred provider organizations, which are more expensive than HMOs, also offer a network of doctors but allow you to see out-of-network docs, usually requiring you to pay a percentage of the cost instead of the copayment required for in-network physicians. Fee-for-service plans are even more expensive. They typically allow you to select any doctor you like and don't demand the preapproval for services that HMOs and PPOs might require. However, they will often limit the spectrum of treatments available for reimbursement and also charge high deductibles.
These state-run programs are a last resort for the 'medically uninsurable,' people who either have been denied private insurance or can access only very expensive or restrictive coverage'which is not to say that the programs come cheap. There are often high deductibles, and monthly premiums run between 125% and 200% of the average comparable rate for private coverage. Watch out for lifetime benefit caps, which can be as low as $350,000 or as high as $2 million. The average cost to treat HIV is $20,000 per year and is much higher for people with advanced cases. About 30 states have these programs. For more information or to contact your state's high-risk pool, visit www.naschip.org.
Flexible Spending Accounts
A flexible spending account is designed to shelter from taxes the money you spend on unreimbursed medical bills. Ask if your employer offers this program. At the beginning of the year, you decide on a set amount of money you want deducted from your paycheck for the year'some companies impose a limit. You won't have to pay taxes on this money, and you can then draw it out of the account to pay for your health care. However, there is a 'use it or lose it' rule that says you must forfeit any money left unspent at the end of the year. Tax agencies also require you to keep receipts for all eligible expenses to prove that you have not sheltered more money than you needed.
If you lose employer-sponsored group health coverage for any reason other than being fired for 'gross misconduct,' a 1986 federal law that goes by the acronym COBRA allows you to continue your same health insurance for 18 months. Some states allow for more time; California, for example, permits 36 months. The catch? You have to pay the full tab: the premium you paid while employed plus the amount your employer was contributing plus a 2% surcharge. In some states COBRA premiums may be paid by ADAP's CARE/HIPP or by Medicaid.
You need to be proactive about applying for COBRA. After learning your coverage will end, immediately speak with your company's benefits department and go to www.cobrainsurance.com or www.dol.gov or call (866) 444-3272. Once your employment benefits terminate, you have only 60 days to sign up for the program and then 45 days to mail in your first payment. Keep in mind also that you'll have to pay premiums retroactively to the point when you lost coverage.
If the Social Security Administration has verified that you are disabled (having an AIDS diagnosis is recognized as a disability; being HIV-positive is not), you may qualify for an extra 11 months of COBRA. The government allows this extension because it takes 29 months for a disabled person who applies for Medicare to receive full benefits. So if you lose or quit your job and go on COBRA with the intention of eventually transitioning to Medicare, make sure to begin the process of applying for Medicare at the same time that you apply for COBRA to prevent a lapse in coverage once COBRA runs out. Keep in mind, though, that you will have to pay 150% of the usual cost of COBRA during the extension period.
Veterans Health Administration
If you're a U.S. veteran with an honorable discharge, you may be eligible for care at any of the 157 hospitals and 862 primary care clinics operated by the Veterans Health Administration nationwide. Eligibility is prioritized: Vets with service-related disabilities jump to the front of the line, followed by former prisoners of war, Purple Heart recipients, and those who are eligible for Medicaid. Because of the current federal budget squeeze, new applicants with higher incomes who do not have service-related conditions or injuries will not be admitted. Most VHA hospitals have an HIV coordinator to help manage care. Unfortunately, not all vets live close to a hospital. And while many vets receive free care, those in lower-priority groups may have to pay modest premiums and copays, especially for treatment not related to service injuries. If money is still tight, you can request certain waivers or a hardship determination, which will help keep costs low. For more information or to apply for benefits visit www.a.gov or call (877) 222-8387.
State-Run Insurance Plans
Many states run programs that subsidize private health insurance for lower-income residents who don't qualify for Medicaid or Medicare. For example, the Healthy New York program allows state residents with incomes under $23,800 a year to choose a major insurance carrier and pay a subsidized premium of about $200'compared to the $500 or more they'd pay for a standard private policy. The benefits in this program are more limited than with ordinary private insurance, however, and there's a relatively low cap on medication reimbursement. If your medication benefits are restricted, ask your state ADAP to fill the gap. Visit www.niac.org to find your state's department.
If you inject street drugs and don't already access a needle-exchange program, you may want to think about doing so. Not only can they help you prevent transmission of HIV to your shooting partners, but many of the programs provide free health care. While some refer you to community health centers or public hospitals, others are able to provide more comprehensive on-site care. While there are no promises to this effect, many programs that make referrals try to send injection-drug users to physicians who follow harm-reduction methodology and who won't push an antidrug agenda on their patients. To see if a program is available in your area try the North American Syringe Exchange Network's site at www.nasen.org or call (253) 272-4857.
Public Hospitals and Community Health Clinics
According to the Center for Studying Health System Change, less than half of all uninsured Americans are aware of what are known as 'safety net providers,' which can provide free or reduced-cost health care to those who can't afford to pay. The most common providers of this care are public hospitals, community health centers, local health departments, and teaching hospitals.
The Kaiser Family Foundation estimates that community health centers treated over 48,000 Americans with HIV in 2000. These centers typically offer a wide variety of primary health care services and are often a good source of one-stop shopping for HIV care, especially if the clinic is tailored specifically to HIV treatment. Many centers collaborate with public hospitals and can transfer patients for specialized care. Ask if the clinic or hospital provides case managers who can help you navigate the health care system. To find a health center in your area visit www.askhrsa.gov. For public hospitals call the National Association of Public Hospitals and Health Systems at (202) 585-0100 or www.naph.org, click on the about our members link, and then select list of members.
Piecing together the funds to pay for health coverage and prescriptions can be a complicated'and frightening'task, especially for people with chronic illnesses like HIV disease. But there are solutions out there, even if it means combining two or more of the programs described here. We encourage you to access help through all channels available to you'by getting in touch with any of the sources listed here; by talking to your doctor, case manager, or employer benefits counselor; or even by quizzing your insurance-savvy friends. With some perseverance you can solve the puzzle and make the systems work for you.