In Our Own Words: Why Women Demand Family-Centered Care

Yes we are
Yes we are

Take Action to Sustain Women-Centered Care and Services

In March 2014, President Obama’s budget for 2015 was released, proposing the elimination of Part D of the Ryan White HIV/AIDS Program. Part D provides family-centered medical care and supportive services to women, infants, children and youth living with HIV.

Positive Women’s Network – USA and other organizations are deeply concerned about this proposal and demand to see the evidence that drove this decision. Within the Ryan White Program, and across the spectrum of care for people living with HIV, services and care designed to meet women’s needs are not disposable!

Perspectives:

 

Webinars:

 

HRSA is currently taking comments on the proposed consolidation of Part D services under Part C, and is working on a Funding Opportunity Announcement (FOA) which integrates Part C and Part D funding. Email HRSA with your comments and concerns TODAY at: RWPartC2015Proposal@hrsa.gov

Below are some talking points for advocates to consider when crafting your emails to HRSA. See a full list of Part D talking points.

  • All parts of the Ryan White Program serve women, and need to offer women-centered services. Part D grew out of a need to tailor, and fund, specific services for women and families.  This need is still very real — but it does not let other parts of Ryan White off the hook in their responsiveness to the care and service needs of women. Women-centered services are needed across all parts of Ryan White.
  • The Ryan White Program is successful at retaining people with HIV in care and should be maintained, not eliminated, as the Affordable Care Act (ACA) changes the landscape of care. Although only 41% of women living with HIV nationally are retained in care, the Ryan White HIV/AIDS Program retains 77% of its female clients in care, according to a recent report by the Health Resources and Services Administration (HRSA). In addition, Part D has helped drastically reduce rates of vertical HIV transmission through proactive outreach to and coordinated care for pregnant women living with HIV and their families. Eliminating Part D could negatively impact those outcomes.
  • Supportive services are not extra, they are essential for many women and young people to remain in HIV care. We cannot achieve the care and treatment goals of the National HIV/AIDS Strategy without maintaining supportive services including medical and non-medical case management, peer-based programming, transportation, housing, childcare, mental health and substance use services, food vouchers and other vital services. The HIV Cost Services and Utilization study showed that 76% of women with HIV had at least one child under the age of 18 in their homes. In addition, young people, the fastest growing population living with HIV, need stable, coordinated care and specialized services, including culturally competent medical care and psychosocial support, to maintain their health. When supportive services are absent, women and young people living with HIV are likely to face increased barriers to staying in medical care. Programs delivering these supportive services for women and families are at risk of being decimated under the proposed elimination of Part D.
  • Community-based and culturally relevant services may be at risk if Ryan White Part D is eliminated. If Part D is subsumed under Part C, community-based providers who have developed years of culturally relevant expertise may not be funded to provide these services. Many services provided through Part D come through subcontracts with community-based organizations and collaboratives.  There is currently no mechanism for this in Part C. How will HRSA assess the impact of this proposed consolidation on community-based services and community-based organizations?
  • In the event that there is a consolidation of Part D services into Part C, Part C programs must be prepared to provide culturally relevant, gender-sensitive sexual and reproductive health care during all parts of the lifespan of women living with HIV, not only when a woman is pregnant. In addition, we need to understand what will happen to all the services currently provided by community-based organizations under Part D.
  • Administrative problems cannot be solved by cutting vital services. More paperwork, site visits, oversight, and other facets of administrative burden take people away from the work of care, and these very real barriers need to be addressed. But administrative concerns should not be solved by cutting essential programs for women living with HIV.
  • In closing: Ryan White Part D is a vital source of funding for services focused on women and families. However, it is necessary that women’s unique needs be addressed across all parts of the Ryan White Program, and across the full spectrum of HIV care and services in the U.S.

Additional Part D Advocacy Resources:

 

Stay tuned for more, and sign up below to stay informed!

 

Sign Up: Part D Advocacy!

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President Obama’s budget proposing the elimination of Part D of the Ryan White HIV/AIDS Program, which provides family-centered medical care and supportive services to women, infants, children and youth living with HIV, prompted outrage from our communities — as you can see above. It also inspired many women living with HIV to share their perspectives around receiving, and providing, services tailored to meet the needs of women, young people and families.

You can read some of those reflections below, and feel free to share your own in the “Comments” section of this page. 

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“As a woman diagnosed during pregnancy, I have personal knowledge about Part D. When I found out my HIV status I thought I was going to die and I was terrified of that happening.  I was fortunate there was a Title IV (Part D) program called the Pediatric AIDS Program (PAP). It was at this agency I learned about HIV; I was able to get the counseling I needed for me and my son. …

“New Orleans was one of the first cities to receive the pediatric grants, making New Orleans a pioneer in this movement. I have experience receiving Part D services and in working in two different Part D programs; this does not make me an expert but it does put a human spin on things.” — Gina Brown, PWN-USA Board member, New Orleans, La.

“At age 23 I found myself ill and having to prepare to transition into adult care; this was also the start of the health care reform transition. I found myself without being able to get the care that I needed and running into roadblock after roadblock to getting the help I needed. Adolescents living with HIV need stable, coordinated care to be able to maintain their health, and to support all aspects of a smooth transition to adult care providers. This model of care may also be standing in for parental support, especially for youth who have lost parents to complications of AIDS.” — Marissa Smith, regional co-chair, PWN-USA-San Diego, who found out she was living with HIV at age 8

Sonia

“As a woman living with HIV who has received care from Part D, it appears as if the medical care and supportive services provided to women, infants, children and youth with HIV by Part D programs is of little concern to the President and his Administration when the reality is that these services are vital to our survival.  Congress must oppose the President’s FY 2015 proposed budget and restore the funding to Part D programs.” — Janet Kitchen, a member of PWN-USA who accessed case management and women’s health services through Part D early in her diagnosis, and now serves as a consumer quality advisor to a Part D program in Florida

“As a woman living with AIDS and the founding director of an organization for women living with HIV, I know the vital importance of having dedicated funding for women. There are usually specific gender-related experiences for women living with HIV/AIDS that create unique barriers to accessing and remaining in care. Part D provides these necessary services so they may receive consistent, high-quality health care. We need to fight to keep these services intact.” — Susan Rodriguez, founding director of SMART in New York City

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