Ryan White Programs
Click on a link below for more information about the Ryan White programs:
- About Part A
- About Part C
- About Part D
- Clinical Trials
- Disclosure Issues
- Ryan White HIV/AIDS Program
- Who was Ryan White
The Phoenix EMA Ryan WhitePart A HIV Health Services Planning Council is a federally mandated community group appointed by the Maricopa County Board of Supervisors to plan the organization and delivery of Ryan White CARE Act Part A funded HIV services. Link to Planning Council:Planning Council board members
Part D programs started in 1988 as the Pediatric AIDS Demonstration Projects. The 13 original projects served infected infants and children, infected pregnant women and their families. The projects provided supportive care to families to help infected children receive medical care. In 1994 Congress funded these projects under Part D of the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act . The Part D program for this community was begun in August 1998 with a Ryan White Part D grant to the Maricopa Integrated Health System. A listing of all Ryan White programs is available on the HIV/AIDS Bureau website.
Purpose of the Part D Program - The Part D program focuses on providing coordinated, culturally competent, family-centered medical care. It also pays for other services, like case management and childcare, that help clients get the care they need. Currently, in the United States there are Part D programs in 34 states, the District of Columbia, Puerto Rico, and the Virgin Islands. In Arizona there is only one Part D program this one in Maricopa County.
Why Congress Funds the Part D Program - Part D funds are now used to support programs that:
- Make sure that HIV-infected women, infants, children, and youth have access to HIV care that can make a difference
- Test and treat pregnant women to prevent HIV from passing from the mother to her child
- Educate clients about the benefits to them of being part of clinical research; and
- Help to reduce barriers to care for HIV+ women, infants, children, and youth.
Clinical trials for women are conducted through Southwest Center. Helpful Information is available in both English and Spanish . Talk to your primary care doctor if you are interested in participating in a clinical trial. He or she can help you find out if you can benefit from the studies that are currently being done.
Clinical trials for children are conducted at Phoenix Children's Hospital's Bill Holt Clinic. The Bill Holt Clinic is a subsite for the University of California at San Diego in the Pediatric AIDS Clinical Trials Group (PACTG). HIV-positive children can enroll in the trials that the PACTG offers through the Bill Holt Clinic. Currently, this site is participating in a national long-term follow-up study of infected children that looks at medications, adherence, growth and development, complications, puberty, and other issues.
When you test positive for HIV, it can be difficult to know who to tell about it, and how to tell them.
Telling others can be good because:
- You can get love and support to help you deal with your health.
- You can keep your close friends and loved ones informed about issues that are important to you.
- You don't have to hide your HIV status.
- You can get the most appropriate health care. . You can reduce the chances of transmitting the disease to others.
- In many states, you can be found guilty of a felony for not telling a sexual partner you are HIV-positive before having intimate contact.
Telling others may be bad because:
- Others may find it hard to accept your health status.
- Some people might discriminate against you because of your HIV.
- You may be rejected in social or dating situations.
You don't have to tell everybody - Take your time to decide who to tell and how you will approach them. Be sure you're ready. Once you tell someone, they won't forget you are HIV-positive.
Here are some things to think about when you're considering telling someone that you're HIV-positive:
- Know why you want to tell them. What do you want from them?
- Anticipate their reaction. What's the best you can hope for? The worst you might have to deal with?
- Prepare by informing yourself about HIV disease. You may want to leave articles or a hotline phone number for the person you tell.
- Get support. Talk it over with someone you trust, and come up with a plan.
- Accept the reaction. You can't control how others will deal with your news.
People You May Have Exposed to HIV: It can be very difficult to disclose your status to sexual partners or people you shared needles with. However, it is very important that they know so they can decide to get tested and, if they test positive, get the health care they need. The Department of Health can tell people you might have exposed, without using your name.
Employers - You may want to tell your employer if your HIV illness or treatments interfere with your job performance. Get a letter from your doctor that explains what you need to do for your health (taking medications, rest periods, etc.). Talk with your boss or personnel director. Tell them you want to continue working, and what changes may be needed in your schedule or workload. Make sure they understand if you want to keep your HIV status confidential.
People with disabilities are protected from job discrimination under the Americans with Disabilities Act (ADA). As long as you can do the essential functions of your job, your employer cannot legally discriminate against you because of your HIV status. When you apply for a new job, employers are not allowed to ask about your health or any disabilities. They can only legally ask if you have any condition that would interfere with essential job functions.
Family Members - It can be difficult to decide whether to tell your parents, children, or other relatives that you are HIV-positive. Many people fear that their relatives will be hurt or angry. Others feel that not telling relatives will weaken their relationships and may keep them from getting the emotional support and love that they want. It can be very stressful to keep an important secret from people you are close to.
Family members may want to know how you were exposed to HIV. Decide if or how you will answer questions about how you got infected.
Your relatives may appreciate knowing that you are getting good health care, that you are taking care of yourself, and about your support network.
Health Care Providers - It's your decision whether or not to tell a health care provider that you have HIV. If your providers, including dentists, know you have HIV, they should be able to give you more appropriate health care. All providers should protect themselves from diseases carried in patients' blood. If providers are likely to come in contact with your blood, you can remind them to put gloves on.
Social Contacts: Dating - can be very threatening for people with HIV. Fear of rejection keeps many people from talking about their HIV status. Remember, every situation is different and you don't have to tell everybody. If you aren't going to be in a situation where HIV could be transmitted, there's no need to tell. Sooner or later in a relationship, it will be important to talk about your HIV status. The longer you wait, the more difficult it gets.
An HIV-Positive Child's School - It is best to have good communication about your child's HIV status. Meet with the principal and discuss the school's policy and attitude on HIV. Meet with the nurse and your child's teacher. Be sure to talk about your child's legal right to confidentiality.
You can get help with telling others about your HIV status from the counselors at the HIV anonymous test sites, or your HIV case manager. Just remember telling others is your choice.
The AIDS InfoNet, A Project of the New Mexico AIDS Education and Training Center. Partially funded by the National Library of Medicine