15 HIV Resources You Should Know About

Whether you are newly diagnosed with HIV or have lived with the disease for years, there will be moments when you will need to reach out to others for support. And it’s not just about finding a shoulder to lean on (although that is important); it’s about connecting with the resources needed to normalize HIV in your life and overcome any barriers that may be standing in the way of your health and well-being.

Here are 15 resources that can provide you the assistance, expertise, and support needed to better handle many of the challenges faced by people living with HIV:

Where to Find Answers to Your Questions

Living successfully with HIV demands that a person becomes a master of his or her own disease. This starts by answering all of the questions you may have about how the disease works, how to avoid illness, and how to prevent passing the virus to others.

And, sometimes, speaking to your healthcare provider is not enough. You may find yourself in situations where you need advice on everything from family issues and dental care to financial assistance and legal aid. Luckily, there are places you can call almost any time of the day to get the information you need:

• State HIV/AIDS hotlines, many of which are available 24 hours a day, can either provide you the answers you need or refer you to someone in your area who can help. The service is free, and many states maintain both Spanish-language hotlines and TTY/TDD services for the hearing impaired.
• CDC-Info is a toll-free service operated by the Centers for Disease Control and Prevention in Atlanta. It is an excellent resource for accurate and easy-to-understand information about HIV. The call center is open from 8:00 a.m. to 8:00 p.m. EST Monday through Friday and also accepts email inquiries.

How to Find a Healthcare Provider

Finding a qualified healthcare provider you can work with is important for both your health and peace of mind. You need someone who will not only oversee your treatment but will listen to your concerns if you experience side effects, symptoms, or complications.

There are several online resources that can help even if you live far out in the country or have limited financial resources:

• HRSA Health Center Locator, managed by the U.S. Health Resource & Service Administration (HRSA), maintains a database of community health centers which offer medical care to uninsured or underinsured individuals or families. In addition to checkups and treatment, some centers also provide mental health, substance abuse, oral health, and vision services. Payment is made on a sliding scale.
• ReferralLink, operated by the American Academy of HIV Medicine allows you to search for credentialed HIV specialists by location, range of specialties, and other support of clinical services (including substance abuse treatment, hospice care, transportation, and transgender health).

Where to Find Health Insurance

Prior to the enactment of the Affordable Care Act (ACA), only 17 percent of Americans living with HIV had access to private health insurance. While things have improved enormously since the law went into effect, it can still be difficult for some to find affordable, quality health coverage. There are a number of federal and state resources that may be able to help:

• Health Insurance Marketplace, implemented under the ACA, is the first place you should go to compare insurance plans (including benefits, drug formularies, deductible, copay, and out-of-pocket maximums) and assess what, if any, tax subsidies may available to you to bring down monthly costs.
• Medicaid and Children’s Health Insurance Program (CHIP) are federally funded programs run by the state which provide free or low-cost coverage for low-income Americans and other qualifying individuals. The Medicaid/CHIP website allows you to check eligibility by state and even start the application process online.

How to Pay for Your Drugs

While the cost of HIV drugs can often be exorbitant, there are a number of federal, state, and private programs that can significantly cut out-of-pocket expenses—and not only for low-income Americans but middle-income earners, as well.

Eligibility is typically based on annual income ranging from no more than 200 percent of the Federal Poverty Level (FPL) in some states to no more than 500 percent of FPL in others. Some thresholds are set even higher.

• ADAP Directory, managed by the ADAP Advocacy Association, provides you detailed eligibility requirements for the federally funded AIDS Drug Assistance Program (ADAP) administered by each state. The program was established in 1987 to provide free, life-saving HIV drugs to low-income Americans. Since that time, the scope of the program has expanded in some states to provide healthcare provider visits, lab tests, insurance deductibles, and preventive HIV medications.
• Directory of CAPs and PAPs, managed by the National Alliance of State and Territorial AIDS Directors (NASTAD), offers information about co-pay assistance program (CAPs) and free payment assistance programs (PAPs) offered by pharmaceutical manufacturers. The programs are available to low- and middle-income Americans who do not qualify for Medicaid, Medicare, or ADAP. Some programs offer exceptions for people with Medicare Part D drug plans.
• HarborPath is a non-profit organization that helps uninsured people get HIV medications at no cost. HarborPath currently operates in 14 U.S. states and DC and provides one-stop access and mail-order delivery within 48 hours of approval.

How to Find a Support Group

An HIV support group is the ideal way to connect with others who understand what you are going through and can offer advice and emotional support to help you through the toughest of times.

While hospitals, clinics, and community health centers will often organize support groups as part of their services, finding ones in smaller communities can be difficult. If you are unaware of any such groups in your area, there are a couple of options you can explore:

• HIV.gov, managed by the Department of Health & Human Services, has an online services locator that can help you find the treatment and care facilities nearest you. Many of these community-based providers offer counseling and support group referrals, some of which are operated within the centers themselves.
• Meetup is a popular social media website that can connect you to HIV support groups in your area. If you can’t find one, you can create one for yourself with customizable group pages and confidentiality filters to protect member privacy.

How to Find Substance Abuse Treatment

People with substance abuse problems are at increased risk of HIV infection whether they inject drugs or not. Finding an affordable, effective program can often be a struggle, but increased access through Medicaid and private insurance have improved the outlook for those affected by addiction.

• Behavioral Health Treatment Services Locator, operated by the Substance Abuse and Mental Health Services Administration (SAMHSA), can help you find treatment centers and opioid addiction specialists in their area. They can also link you up to support groups or connect you to live referral specialist on their 24-hour helpline at 800-663-HELP (4357).

Where to Find Legal Assistance

Despite positive changes in the public’s attitude toward HIV, people living with the disease can still face discrimination in the workplace, in housing, and in accessing public services. When faced with such injustice, turning the other cheek may not be an option, particularly if it affects your health, relationships, reputation, or income.

There are a number of important resources you can turn to:

• Legal Action Center is a non-profit legal organization that operates a national hotline for people with HIV (800-223-4044). In addition to telephone and online service, the Legal Action Center offers free litigation and legal services to New York residents.
• Equal Opportunity Employment Commission (EEOC) is a federal agency that administers and enforces civil rights laws to prevent discrimination in the workplace. Any job applicant or employee who has been subjected to HIV discrimination can file a charge within 180 days (and up to 300 days in some states) of the offense. If the EEOC decides that your employer is in violation of anti-discrimination laws, it will either seek a settlement or take the case to court.
• HUD Online Complaints, administered the Department of Housing and Urban Development (HUD), encourages persons who have been subjected to housing discrimination to file a complaint in accordance with the Fair Housing Act. The Act specifically outlaws the refusal to sell or rent housing based on race, color, religion, sex, handicap, familial status, or national origin.