Services for Women are Not Disposable! PWN-USA Responds to the President’s Budget Proposal to Eliminate Ryan White Part D
FOR IMMEDIATE RELEASE
Contact: Olivia Ford, email@example.com / 510.333.4262
March 26, 2014, New Orleans, LA
Just a few weeks ago, President Obama’s budget for 2015 was released, 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 (WICY) living with HIV. Positive Women’s Network – USA is deeply concerned about this proposal and demands 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.
Part D-funded programs provide coordinated care and support services to women living with HIV who may be juggling caregiving responsibilities to family members and children. While not all women living with HIV are eligible to receive care through Part D, more than 90,000 WICY access Part D services each year, according to a recent report by the AIDS Alliance for Women, Infants, Children, Youth and Families, which has criticized the proposed cuts. These programs are often entry points into care for underinsured women living with HIV — and for youth, the fastest growing population living with HIV in the U.S.
“As a woman living with HIV, it appears as if the unique, coordinated care and services provided by Part D programs are of little concern to the President and his Administration, when the reality is that these services are vital to our survival,” says 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.
Under the President’s proposed 2015 budget, Ryan White Part C, which funds medical and early intervention services, would absorb Part D-allocated funds and receive a $4 million-dollar increase — but it’s unclear what portion of these dollars would fund services for WICY populations, and what range of services would be covered.
“There are usually specific gender-related experiences for women living with HIV that create unique barriers to accessing and remaining in care,” explains Susan Rodriguez, a woman living with HIV and founding director of SMART in New York City, which provides services to women and youth impacted by HIV. “These barriers are addressed in part through supportive services such as peer-based programming, transportation, housing, childcare, nutritional support and non-medical case management. These services are not extras — they are
essential for many women to be able to receive consistent, high-quality health care.”
Programs delivering these services to women through Part D are precisely those at risk of being cut under the proposed elimination. Professional associations of medical providers, including the Ryan White Medical Providers Coalition and the HIV Medicine Association, have expressed grave concern about this change.
“Part D services helped me to save my life, and enabled me to be a leader in my community and a healthy mother to my children,” says Evany Turk, an Illinois-based PWN-USA member who works with University of Chicago’s Care 2 Prevent Program. Part D’s success in helping to drastically reduce rates of perinatal HIV transmission was made possible, in part, through coordinated care for pregnant women living with HIV and their families.
“When I was pregnant, a small agency funded by Part D sent a community worker to my home to help me learn how to take my meds so my baby would be free from HIV,” Turk recalls. “That same agency came out to help me give my baby HIV meds the first six weeks of his life to be certain he had no chance of contracting HIV. Eliminating these important Part D-funded outreach services will make it harder to retain women in care.”
Although the U.S. Centers for Disease Control and Prevention (CDC)’s HIV care continuum illustrates that only 41% of women living with HIV nationally are retained in care, 77% of female Ryan White Program clients stay in care, according to a recent report by the Health Resources and Services Administration (HRSA). These successes must be maintained and expanded if the U.S. is to reach the National HIV/AIDS Strategy’s goals of increasing access to care and improving health outcomes for people living with HIV.
At a critical moment when the Affordable Care Act is already changing health care delivery for people living with HIV, the Ryan White Program needs to remain stable, not be taken apart. To that end, the 30 for 30 Campaign — a coalition of leaders working to ensure that the unique needs of women are addressed in the national HIV response — sent a letter last week to Dr. Laura Cheever, associate administrator of HRSA’s HIV/AIDS Bureau, requesting an explanation of the Administration’s rationale for the change, as well as the data which drove this decision.
“When I was pregnant and diagnosed with HIV, in 1991, there were no supportive services for women as well as their families,” says Margot Kirkland-Isaac, a Maryland-based PWN-USA member and past Part D program client. “I was admonished and advised to abort my daughter, and even threatened with the removal of my other children. Meanwhile, women in similar positions to mine would take the food they got from the food pantry for themselves and give it to their babies, and would literally starve to death. Twenty-three years later, we’re still fighting for the same thing.
“Far too many women do not seek or will fall out of care simply because programming does not provide a comprehensive, welcoming environment free of judgment, and one that addresses their specific needs,” says Kirkland-Isaac. These kinds of environments must become and remain the norm not just in Part D programs, but in all places where women living with HIV receive care.
If I Were HIV+ … I’d Still Be Me:
Colorado Hosts National HIV/AIDS Anti-Stigma Event
Eye-Catching T-Shirts Are Central Conversation-Starter in Community Education and Awareness Campaign
How would you complete the phrase “If I Were HIV+ …”?
An education campaign to challenge HIV-related stigma will return to Colorado Saturday March 8th through Monday March 10th.
The event, called “IF I WERE HIV+…”, uses eye-catching T-shirts as tools to spark community-wide discussion and action in honor of National Women and Girls HIV/AIDS Awareness Day on March 10. As the HIV epidemic advances through its fourth decade, stigma and discrimination against HIV+ people persist as the greatest barriers to testing and treatment for the more than 1.1 million people living with HIV in the U.S. — and HIV activists cannot fight this stigma alone.
In 2014, women represent a larger share of new HIV infections compared to earlier in the epidemic. Today, at least 25% of HIV-positive people are women, which equals roughly 280,000 women currently living with HIV/AIDS in the U.S. The U.S. Centers for Disease Control and Prevention (CDC) estimates that 16% of women living with HIV don’t know it.
As HIV infection continues to affect approximately 1 out of every 139 American women, stigma and misconceptions about HIV persist. Those who report a personal connection with HIV+ people has decreased. 41% say they know someone who has AIDS, is HIV+ or has died of AIDS. This decrease creates additional challenges to acceptance of people living with HIV. 45% of those surveyed by the Kaiser Family Foundation state they would be uncomfortable having their food prepared by someone who is HIV+. One third of Americans surveyed by the Kaiser Family Foundation believe one of the following popular misconceptions about transmission is true: that they can be infected from sharing a glass (25%) , from a toilet seat (16%) or swimming in a pool with someone who is positive (12%). We need to continue educating our nation and community about HIV.
To increase awareness, the Boulder County AIDS Project (BCAP) joins with Positive Women’s Network–United States of America (PWN-USA) and the Colorado regional group- PWN CO for the fifth annual “IF I WERE HIV+…” community awareness and education campaign. Activists and allies will go about their regular days sporting bright pink tee shirts emblazoned with the slogan “IF I WERE HIV+…” and the frank invitation: “LET’S TALK”. The campaign invites community members to step into the shoes of a person living with HIV, get informed, and ask themselves how they can be part of fighting stigma and improving the lives of women living with HIV.
There are 15,156 people estimated to be living with HIV in Colorado, 12% of whom are women. That percentage, which includes those who haven’t been diagnosed, adds up to about 1,819 individual women. That’s why the activists behind the campaign are looking to gather 181 allies to wear a campaign T-shirt leading up to National Women and Girls HIV/AIDS Awareness Day — nearly twice the number that sported the shirts in 2013.
Each person wearing a T-shirt will represent 10 women living with HIV in our state — members of our communities whose experience with HIV is often invisible. Organizers look forward to the “aha moments” and conversations this boldly visual campaign will incite among community members and their families.
“Surprisingly, the most common reaction was for people to read the shirt, and look away,” commented a Kari Hartel, a past participant in the campaign. “Hopefully those who didn’t join us will take a moment to wonder, would it be so awful if someone thought I could be HIV+?”
Participating community members will share their stories, thoughts and photos during the day at our Facebook group IF I WERE HIV+… as they educate other community members about HIV risks, stigma and the experience of being HIV+. If you’d like to wear a T-shirt to help the campaign reach 181 participants.
If you are interested please send Barb an email at firstname.lastname@example.org.
I Am My Brother’s and Sister’s Keeper. Fight HIV/AIDS!
By Gina Brown, Program Manager, AIDS United
“I Am My Brother’s and Sister’s Keeper. Fight HIV/AIDS!” This is the 2014 theme for National Black HIV/AIDS Awareness Day. National Black HIV/AIDS Awareness Day, which is February 7th, 2014, was first observed in 1999, and since then, advocates, allies and people living with HIV/AIDS in the Black community have worked hard to be “Our Brother’s and Sister’s Keeper”. We’ve organized, united, strategized, articulated and advocated for the need to be our brother’s and sister’s keeper, as we remain dedicated to fighting HIV/AIDS in the Black community.
HIV/AIDS continues to disproportionately affect Black America. Currently, three in five Black Americans know someone living with or who has died from HIV/AIDS. Although we account for less than 14% of the U.S. population, Black America represented 44% of all new HIV infections in 2010, according to the Centers for Disease Control and Prevention (CDC). Men who have sex with Men (MSM) remain the group most heavily affected by HIV, while young Black MSM continue to account for more than half of new infections among young MSM. The CDC reports a 21% decline in new HIV infections among women overall, however the new data shows that black women continue to be far more affected by HIV than women of other races/ethnicities. Of all the women living with HIV in the United States, approximately 66% are African American.
According to the Southern AIDS Strategy Initiative (SASI), in 2010, 46% of all new diagnosis of HIV infection occurred in the South. Compared to other regions, a higher percentage of diagnoses in the South were among women (23.8%), Blacks/African Americans (57.2%). With numbers this high, it is crucial to expand Medicaid in the South, since Medicaid Expansion would allow greater access to care and treatment for HIV positive individuals.
What does it mean to be “Our Brother’s and Sister’s Keeper?” One way this can be interpreted is that a sister or brother takes responsibility for the others behavior. It means taking care of them and not ignoring their problem, it also means being concerned with someone else besides you. You keep him or her from harm. As a woman living with HIV, the way I do my sisterly duty is by speaking for those women who have yet to find their voices. I take this charge seriously because I AM my Sister’s Keeper!
So looking forward, how do we take greater responsibility for one another in the Black community, as we recommit to ending the HIV/AIDS epidemic? First, EVERY Black American must know his or her HIV status. Second, every person who tests HIV positive must have access and be linked to care, which helps to improve their health outcomes. Third, partners and allies must work to ensure that all groups and individuals who are challenged by social determinants work to keep the Black community within reach of access to opportunities that limit poverty and social exclusion. This focus is critical as we work together to end the HIV/AIDS epidemic. Since its inception, National Black HIV/AIDS Awareness Day provides a heightened opportunity for Black Americans to come together for education, testing, involvement and treatment, if necessary.
As our Brother’s and Sister’s Keeper in the Black community, on this National Black HIV/AIDS Awareness Day, we are dedicated to ending the HIV/AIDS epidemic in America.
Living with HIV: One Woman’s Inspiring Story
In honor of AIDS Awareness Month in December, we spoke to HIV/AIDS activist Penny DeNoble, who takes a brave stand against the virus—and inspires others to do the same.
What is World AIDS Day?
World AIDS Day is held on 1 December each year and is an opportunity for people worldwide to unite in the fight against HIV, show their support for people living with HIV and to commemorate people who have died. World AIDS Day was the first ever global health day and the first one was held in 1988.
Why is World AIDS Day important?
Around 1.5 million are currently living with HIV in the U.S. and globally an estimated 34 million people have HIV. More than 25 million people between 1981 and 2007 have died from the virus, making it one of the most destructive pandemics in history.
Today, many scientific advances have been made in HIV treatment, there are laws to protect people living with HIV and we understand so much more about the condition. But despite this, people do not know the facts about how to protect themselves and others from HIV, and stigma and discrimination remain a reality for many people living with HIV. World AIDS Day is important as it reminds the public and Government that HIV has not gone away – there is still a vital need to raise money, increase awareness, fight prejudice and improve education.
What should I do on World AIDS Day?
World AIDS Day is an opportunity for you to learn the facts about HIV and put your knowledge into action. Find out how much you know by taking our online quiz: Are you HIV aware? Test your knowledge and awareness by taking the quiz and act aware by passing the quiz on and sharing it with your friends on Twitter and Facebook.
If you understand how HIV is transmitted, how it can be prevented, and the reality of living with HIV today – you can use this knowledge to take care of your own health and the health of others, and ensure you treat everyone living with HIV fairly, and with respect and understanding. Click here to find out the facts.
You can also show your support for people living with HIV on World AIDS Day by wearing a red ribbon, the international symbol of HIV awareness and support.
World AIDS Day is also a great opportunity to raise money for NAT (National AIDS Trust) and show your support for people living with HIV. If you feel inspired to hold an event, bake sale or simply sell red ribbons, click here to get started. If you’d like to see what other events are taking place — click here and find out more.
But what about after World AIDS Day?
Although World AIDS Day is a great opportunity to get the public talking about HIV and fundraise, we need to remember the importance of raising awareness of HIV all year round. That’s why NAT has launched HIVaware — a fun, interactive website which provides all the information everyone should know about HIV. Why not use what you have learnt on World AIDS Day to Act Aware throughout the year and remember, you can fundraise at any time of year too — NAT is always here to give you suggestions and ideas.
Penny DeNoble and The Issue of Blood Outreach Recognized in POZ Magazine, as “POZ 100 Unsung Heroes”, November 2013 Edition
Planning Council and Community Members:
I am very honored to send out this email notice to recognize the work of our very own DHRPC member Penny DeNoble!
For this year’s POZ 100, we asked individuals and organizations like you to nominate an HIV-positive person in their community who is an unsung hero in the fight against AIDS. The individuals on this year’s list may not consider themselves to be heroes, but we do. Each person—in his or her own way—is taking a brave stand against the virus. They are fighting back. They do so, not because they’re seeking glory or accolades, but because fighting back is a means to their survival.
Congrats to Denver’s Penny DeNoble!!!!
Founder and Director
The Issue of Blood
Positive since 1986
Penny DeNoble has been an educator, community activist and HIV advocate for 15 years. Her organization, The Issue of Blood, is an outreach and consulting service that aims to bring awareness, education and information about the prevention of HIV and other STIs and unplanned pregnancies. She collaborates with other AIDS organizations in the Denver area, and she sits on the board of The Greater Denver Interfaith Initiative and is the vice-chair of the Denver HIV Resources Planning Council. Penny is a member of the 2020 Leading Women’s Society, The White House Project’s MAC AIDS Fund Advisory Committee, Positive Women’s Network, Treatment Advocacy Group and AIDS Alliance for Children, Youth and Families. Her goal is to help HIV-positive women reach their communities through education, leadership development and advocacy.
On behalf of the DHRPC we want to thank you Penny for all the volunteer time and energy you have given, your contribution is invaluable.
Congratulations! In recognition for your work in the HIV community, you have been selected for the POZ 100!
Here’s a link to the article and full list on POZ.com:
Thank you again for all that you do. POZ is thrilled to be able to honor you and your work on the POZ 100 this year.
Internal authority is the charisma, the self-esteem, the personality that causes a person to command the respect of others. It is the element that characterizes all “natural leaders”. External authority, on the other hand, is derived from the symbols and manipulations attached to the person’s position. The principle of authority recognizes the distinction between internal and external authority and says that the leader should develop and enhance his or her internal authority.
Internal authority has nothing to do with a person’s physical characteristics or actions, with wealth, social position, or status. Nor is it derived from success. Rather, internal authority is a conviction that you can move the people in your group toward goals of beneficial permanence. The person with internal authority is an individualist with a strong sense of self-esteem.
External authority derives its influence not from personal strength and ability, as internal authority does, but from external signs, symbols, and manipulations. It is an authority that can be taken away from a person. It is an authority that is immediately recognizable to those who know how to read the signs.
You have within yourself an internal authority. If you are going to be a leader, you must take steps to develop this authority. First though, it must be said that no one should exercise authority over others until he or she has first learned to accept authority over himself or herself. Internal authority is developed by acquiring self-confidence. It is developed by believing in the importance of your mission. It is developed by not revealing fatigue, by keeping your own counsel, and by respecting the rights and emotions of others. It is developed by striving for excellence. Internal authority is developed by believing in your own success.
All of the principles of leadership are important, but not all are absolutely essential. Cultivating the principle of authority is. It is essential that a leader have and demonstrate to others internal authority and use to his or her benefit the symbols of external authority that go with his or her position.
Adapted from Lead On, by John Edmund Haggai
Difficulties exist. Every leader has pressures and problems that can make him or her want to give up. But if the Creator has given you a vision and you have established a goals program to accomplish your mission, you need staying power to overcome these difficulties. The principle of staying power says that problems and difficulties can be overcome, but it takes staying power. The leader has to hang in there. Moreover, God sends us opportunities to exercise staying power so that we will be strengthened to overcome greater problems and difficulities later.
The leader does not need education, charm, well-connected family ties, or influential firends, staff, equipment, materials, prestige, or even profound biblical understanding to master the principle of staying power. All you need is determination. You can do it today.
Staying power is essential to overcoming problems. Staying power can overcome illness, personal desires, financial limitations, the perils of prosperity, family opposition, betrayal and persecution, misinterpretation of events, and a host of other impossibilities.
Many leaders at some time question whether or not they ought to quit. When those moments hit, they can strengthen their staying power by remembering their vision, by focusing on their goals, by visualizing their goals as being already accomplished, by relaxation, by reading biographies, and by living in communion with God.
Staying power assures success. Problems and discouragments will face the leader, but he or she can overcome them with staying power.
Adapted from Lead On, by John Edmund Haggai
Dear Friend of AIDS Alliance and The AIDS Institute:
We are conducting a community education project in your area as part of a larger project called Be The Generation to End AIDS. This project is intended to provide community members with information about new and future HIV prevention approaches.
We have trained and mentored 17 community educators around the country to conduct short, community based education and discussion sessions on Biomedical HIV Prevention and prevention research. These education and discussion sessions can be delivered in a support group, at a staff meeting, connected to a recovery meeting, a church or social event, at a special event organized just for this purpose, or in other settings as chosen by the community educator. Each community educator may choose the subject area that is appropriate for the audience and the topics they are most comfortable with. Topics include HIV vaccines, HIV microbicides, HIV Treatment as Prevention and/or Pre-exposure prophylaxis for HIV.
Community educators have been chosen because they have demonstrated tremendous leadership, education and advocacy skills. We have developed power point presentations and hand-outs on each topic for the community educators to use and they have completed a series of training sessions and review of the content. Community educators are tasked with conducting up to four education and discussion sessions between now and May 24, 2013. There is no fee for these sessions.
AIDS Alliance/The AIDS Institute is a national partner in Be The Generation to End AIDS, a partnership between community leaders, local and national organizations, health professionals, and educators to reach communities most affected by HIV with the goal of increasing awareness of and knowledge about HIV prevention research and advances. Our work is supported by the BTG Bridge Project, collaboration between FHI 360/HIV Prevention Trials Network (HPTN) and the Legacy Project at the Office of HIV/AIDS Network Coordination (HANC).
Executive Director/The AIDS Institute and AIDS Alliance
Senior Executive Consultant/The AIDS Institute and AIDS Alliance
FOR IMMEDIATE RELEASE:
Contact: Waheedah Shabazz-El, Founding Member, email@example.com, (267) 231-2647
Sonia Rastogi, Communications Director, firstname.lastname@example.org, (408) 306-6805
April 16, 2013, New York, NY – “Tyler Perry’s Temptation left me emotionally pained, angry and disappointed. Mr. Perry, a brilliant film maker, missed a genuine opportunity for honest and accurate community education around HIV. Instead, Temptation perpetuated HIV sensationalism and stigma. It demonized people living with HIV as irresponsible and portrayed women who acquire HIV as an undesirable, reclusive, sub-species, destined to live out their lives in suffering commented Waheedah Shabazz-El, a woman living with HIV.
Two weekends and $212.7 million later, Tyler Perry’s film Temptation perpetuates the War on Women, fuels stigma and discrimination towards people of color and people living with HIV, and condones the belief that people living with HIV are sinners, who deserve punishment.
Positive Women’s Network – USA, a national membership body of women living with HIV advocating for the rights and dignity of all women, is deeply disturbed by Perry’s stigmatizing portrayal of women, people living with HIV, and people of color. Instead of using his film as a moment to challenge the rampant violence against women in our society, break down the self-hatred that causes people to live in shame, and showcase powerful role models for our young girls and boys, Perry demonizes and vilifies people of color and people living with HIV – two of the most targeted, profiled, and marginalized communities in the U.S.
By perpetuating a rhetoric that raises illogical fears that HIV-positive people are inherently violent, corrupt, immoral, and deviant, Perry plays into the misguided belief that people living with HIV deserve to be punished. In the U.S., HIV criminalization laws are real. They separate families and lock up people in 34 states and 2 territories. These laws are barriers, preventing people from HIV testing, accessing treatment and seeking medical care or social support. Many people living with HIV believe they do not deserve a fulfilling and dignified life. These laws do not prevent HIV transmission, they keep people from knowing their status or seeking care. His film effectively reverses the phenomenal victories of groups working to combat HIV stigma and criminalization, including the HIV Prevention Justice Alliance, SERO Project and Positive Justice Project.
By creating a rhetoric that condones violence against women and blames women for their “actions,” Perry dismisses the complex realities of women’s lives.
Movies and messages like this reinforce judgments that are akin to a societal death penalty. Women are dying because they can’t bear knowing and/or don’t want anyone else to know that they may be living with HIV. Thus they may choose not to engage in care, take medication, and/or disclose. 2 out of 3 women who newly test positive are Black women. Women are more likely to be diagnosed late with a dual HIV and AIDS diagnosis. In addition, Black women account for the largest share of deaths among all women living with HIV and in 2009, HIV was the 4th leading cause of death for Black women ages 25 to 44. Stigma and discrimination are largely responsible for women getting sick faster and dying sooner.
As partners, sisters, mothers, daughters, teachers, and lovers, living with HIV, we denounce Perry’s portrayal of HIV as a punishment for bad behavior. We further denounce Perry’s portrayal of HIV-positive women as unworthy of love, incapable of relationships, and his portrayal of men living with HIV as sexually irresponsible predators.
Positive Women’s Network – USA calls for the responsible and respectful use of the media by filmmakers. Mr. Perry, as someone with incredible power, resources, and privilege to dictate our society’s culture and norms, it is your responsibility to accurately represent those who you portray. Give us a call next time you want to make a film about women and HIV.