Living with HIV? 5 Facts

The new health reform law offers people with HIV unprecedented opportunities to improve their health.  Here are just some of the reasons:

1. Comprehensive, free health coverage for all very low-income people:  Medicaid is the nation’s safety net health program for low-income people, currently covering about four in ten people with HIV/AIDS.  In 2014, Medicaid will expand to provide most low-income people living with HIV access to comprehensive health care.  Read more about this critical low-income health care program. ·

Who’s in?

If you earn less than $15,000 for a single person or $19,500 for a couple (below 133% of the federal poverty level, if want to get technical) you’ll be eligible for Medicaid in 2014. In addition, in 2014 most people will be able to have some savings (or assets) and still qualify for Medicaid. This is different than how it is today, when you not only have to be very low-income with very little savings to qualify for Medicaid, but you also have to fall into a certain category too (like being disabled or pregnant). This means that right now, many people with HIV can’t get on Medicaid until they become so sick that they’re disabled. In 2014, you won’t have to get sick in order to qualify for Medicaid.

Who’s out? 

Unfortunately, if you’re an undocumented immigrant, you won’t be able to get Medicaid benefits.  You will continue to need the assistance of safety-net programs like Ryan White and free care from places like community health centers.    Most legal permanent residents and other legal immigrants will only be able to join Medicaid after being in the U.S. for five years. There are some exceptions, such as refugees and people seeking asylum, who will be able to receive Medicaid without waiting. We are committed to continuing to work on access to care for those who are undocumented or waiting to receive benefits.


There will be a new standard Medicaid benefit package that will help you manage your health, and it must include “essential health benefits” such as prescription drugs, preventive services, chronic disease management, mental health, and substance use services.  The federal government will broadly define which benefits must be covered and states will have the option to add more.  If you want to get involved and make sure the needs of people with HIV are met, sign up for the HIV Health Care Access Working Group.

Access to HIV medications 

One of the most important medical needs for people with HIV is life-saving antiretrovirals.  Medicaid will cover those drugs, as well as medications for other conditions.  If you qualify for coverage, you won’t have to count on underfunded AIDS Drug Assistance Programs, which in some states have waiting lists, or free pharmaceutical assistance programs that can be complicated to access and are not long-term solutions. In addition, you’ll have access to drugs to treat other health problems, like depression, heart disease or diabetes.

But it ain’t perfect

We’re the first to say that Medicaid isn’t perfect.  Many providers won’t take new Medicaid patients because the amount the program pays doctors, pharmacies and hospitals is too low.  Many state programs are restricting and cutting benefits.  While improvements are needed, expansion of Medicaid has the potential to transform access to health care for many uninsured individuals and families. Expansion of Medicaid will also be fully funded by the federal government for several years and will continue at a very high rate of federal funding which may help alleviate some of the current restrictions and cuts.  If you want to get involved and make sure the needs of people with HIV are met, sign up for the HIV Health Care Access Working Group.

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2. Get affordable, private health insurance: Moderate and middle-income people living with HIV earning between about $15,000 and $44,000 a year will be able to receive tax benefits and financial assistance to purchase private health insurance with comprehensive benefits. Learn why this will transform the fight against HIV. ·

Get private insurance, even if you have an illness like HIV, for the same price as a healthy person.

For the first time, people with HIV will be able to purchase private insurance without worrying about being denied coverage or paying higher rates because they have HIV.

Get better access to specialists, pharmacies, and hospitals

Private insurance plans contract with many diverse providers, unlike Ryan White services which generally can only offer HIV care. It is likely you could have a wider choice of doctors and specialists to treat HIV and other conditions.

You’ll get help affording your insurance

If you earn less than $44,000 (for a single person), you’ll be able to get financial assistance to help you afford private insurance.  The amount you’ll pay out of pocket for prescriptions or doctor or hospital visits will be capped.  Be aware, however, that the financial assistance you get might not be adequate, which could mean that you may still have a hard time affording your care.  Ryan White services may be available to help you with out-of-pocket expenses.

Help finding the private plan that’s right for you

States and the federal government will set up unbiased, independent, online health care marketplaces (called Health Insurance Benefit Exchanges) where you can compare health plan benefits, cost, coverage, and quality.  These Exchanges will also allow you to enroll in a plan and will pay subsidies on your behalf.

Things to watch out for

Every state will set up their health care marketplaces (or exchanges) differently, and the devil’s in the details.  Many states have already begun this important conversation. Learn more about the issues you need to watch out for and how you can get involved.  You can also sign up for the HIV Health Care Access Working Group e-mail list if you want to get involved.

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3. Private health insurance companies will have to play by the new rules:  The health reform law will finally force health insurance companies to treat consumers fairly. Learn more about how people with HIV will benefit. ·

You can buy insurance – no matter what condition you have

Starting in 2014, health insurance companies will be required to sell you insurance, even if you have HIV or another condition.  You’ll be able to get insurance when you need it most.

You’ll pay a fair price for insurance

Insurance companies won’t be able to charge you more because you’re sick or—most outrageously—because you’re a woman.  And although they will be able to charge more for age, where you live, or whether or not you smoke, new regulations limit the increase.

Your policy can’t be cancelled if you get sick

Insurance companies used to be able to cancel your policy if you got sick.  They would comb through your medical records to find something that you didn’t disclose on your insurance application. That will now be against the law.

You will not be subject to annual or lifetime caps on your insurance

In the past, some people with HIV found that they did not have enough insurance to cover all their medical needs.  Their insurance company would only pay a certain amount of money for their care each year or over their lifetime.  In other words, when they needed their insurance most because they were very sick, it wouldn’t cover them. Insurance companies are no longer allowed to place those kinds of restrictions on the amount of money they spend on your care.

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4. Better Medicare:  For people with HIV who are disabled and on Medicare, the Part D prescription drug benefit is already becoming more affordable. Read more about this and other improvements. ·

Does ADAP pay for your drugs? It counts!

Payments made by the AIDS Drug Assistance Program (ADAP) can now count toward the trigger that moves you out of the Medicare drug benefit donut hole (or coverage gap) and into meaningful coverage where you won’t pay more than 5% of the cost of your drugs.

More affordable medications for everyone

While you are in the coverage gap (donut hole), you (or your ADAP) will pay only 50% of the cost of name-brand drugs, including HIV medications.  Drug manufacturers will pick up the rest of the cost… how generous!  The donut hole will be eliminated by 2020.

Medicare wellness benefits at no cost to you

Starting now, you won’t pay anything for preventive screenings like HIV tests for those at risk, pap tests and pelvic exams, diabetes, heart disease, or help stopping smoking.

Better coordination for people who have Medicaid and Medicare (dual eligibles or Medi-Medis)

Many people with HIV who have Medicare also rely on Medicaid for some of their services. In the past, it has been very hard to coordinate service delivery between the two programs. A new office was set up under health care reform to determine better ways to make sure Medicare and Medicare are working together.

It ain’t perfect. 

We still have work to do.  There was no real coverage expansion in Medicare. People who are disabled will still have to wait two years after their disability determination until Medicare coverage begins.  Medicare eligibility won’t begin until age 65, despite advocacy efforts to reduce the age to cover younger people.  Finally, some low-income people struggle to afford Medicare, and assistance from programs such as Ryan White will be still be needed.

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5. Get coverage now:  Need health coverage now before 2014?  Health reform sets up some programs that could help you now, and there are some oldies but goodies you might not know about.  Learn more. ·

Pre-existing condition insurance programs (PCIP)

You may be able to get comprehensive, private, more affordable insurance coverage now through special programs for people who have pre-existing health conditions like HIV.  Programs are run by the state or the federal government, depending on where you live. Check out this fact sheet (PDF) from HIV Health Care Working Group.

Your state may also have a High Risk Pool. If so, the premiums may be higher but it could have other advantages over the PCIP.

Get on your parent’s insurance

If you’re age 26 or younger, you may be able to get on your parent’s insurance.  They might have to pay the full cost of your premiums, but you might get better coverage at a lower cost than other options. If you were a foster child, you have access to Medicaid until you turn 26.

Do you have insurance now?

Check with your state office of AIDS to see if you can get help paying for the insurance you have.

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Health care reform will have great benefits, but it will bring new responsibilities as well: Starting in 2014, individuals will be required to carry health insurance under a provision called the “individual mandate”. People who are undocumented will not be required to carry insurance. The law does allow exemptions if you can prove that you can’t afford to pay for your insurance. Otherwise you are subject to financial, but not criminal, penalties if you don’t have insurance.

The Affordable Care Act Finally Unrolls the Carpet: Story written by Benjamin Ryan for POZ Magazine

Project Inform has a great questions and answers document on health reform for people with HIV (in English and Spanish, PDF).

For a useful overview of frequently asked questions about health care reform for people living with HIV, see Project Inform’s factsheet.