Monday, April 28, 2014

A Tweet summary of Part D highlights from AIDS Watch, Day One

Click the link to read a great summary for the day's tweets on Storify!

Advocacy at its finest: 30 for 30, PWN, and others work hard to #SaveRyanWhitePartD on 1st day of AIDS Watch!

The first day of AIDS Watch was a very productive one for Part D advocacy.  A number of advocates involved with the Save Ryan White Part D movement and like-minded allies led a number of activities at AIDS Watch to oppose the elimination and call attention to the needs of the population Part D serves--women, infants, children, youth (which includes teens and young adults), and their family members/caregivers.  The day prior to the beginning of AIDS Watch, Positive Women's Network unveiled a hashtag that would be used to follow women-centered AIDS Watch events, #pwnspeaks, and also welcomed and oriented a number of new and returning AIDS Watch attendees interested in women's issues as well as Part D advocacy.

The morning of AIDS Watch was kicked off with a breakfast for attendees, followed by an opening speech by Douglas Brooks, the new Director of the Office of National AIDS Policy.  As an openly HIV+ individual, his appointment to this position is significant to many.  Brooks emphasized the President and ONAP's commitment to PLHIV, and highlighted accomplishments as well as challenges and goals.

Next, two panels were held to provide updates for pertinent HIV policy issues.

The first panel addressed the Ryan White CARE Act (Ann Lefert, NASTAD), the Affordable Care Act (Malinda Ellwood, TAEP), and HIV Criminalization (Robert Suttle, Sero Project).

The second panel addressed Comprehensive Sex Education (Jesseca Boyer, SIECUS), Stable Housing (Nancy Bernstine, NAHC), Syringe Exchange (Bill McColl, AIDS United), and Budget & Appropriations (Donna Crews, AIDS United).

Through the opening and both panels, advocates incorporated the voices and concerns of the Part D population into all discussions and Q&A: specifically talking about Part D during the Ryan White CARE Act panel; discussing gaps that may remain for vulnerable groups even with ACA implementation; sharing data related to sex education and youth outcomes, etc.

In addition, social media was all ablaze, with positive women leading the pack in terms of tweeting and posting status updates on relevant AIDS Watch happenings, statistics, quotes, thoughts, and ideas.
After the policy briefings, Naina Khanna, executive director of Positive Women's Network-USA co-hosted a training with John Peller of AFC on how PLHIV craft and share their personal stories as a tool for advocacy.

After lunch, the 30 for 30 Campaign led a #SaveRyanWhitePartD panel that allowed positive women, allies, and providers to discuss the elimination and consolidation with HIV/AIDS Bureau (HAB) and Health Resources and Services Administration (HRSA) officials.  It was a pleasant surprise to have Douglas Brooks attend this important meeting about Part D.

The 30 for 30 advocates were ON FIRE!  They spoke candidly about the impact of Ryan White Part D on their personal lives and communities, and they raised important questions and concerns.  In turn, HRSA listened and stated their position.  One important point that was raised by HRSA is that Part D providers need to find a more concrete way to "prove" the effect of their programs, documenting how they support linkage and retention into medical care.

Overall, the meeting was extremely productive, and illustrated the strength of advocates when we unite, as we did today to Save Our Services!  And with regular social media updates that were frequently retweeted and shared throughout the meeting, the advocates present were intentional about keeping the community informed whether or not they were in attendance at AIDS Watch!  We have created a Storify to serve a "tweet summary" of the most salient updates separately for those interested.

Tonight's AIDS Watch activities conclude with an additional briefing as well as an award ceremony to honor two outstanding public officials: US Representative Henry Waxman, US Delegate Donna Christensen, and two outstanding community leaders: Robert Suttle and Tre Alexander.

Tomorrow there are additional opportunities to advocate and work to #SaveRyanWhitePartD through a listening session and legislative visits on the Hill to the offices of Congress officials who have the power to stop this elimination when they begin budget deliberations next month!

Stay tuned for tomorrow's news!  We are so proud of our diverse, passionate, motivated advocates who are standing up for women, youth, and families to #SaveRyanWhitePartD!

Sunday, April 27, 2014

PLHIV and Allies Storm Washington DC for AIDS Watch 2014, April 28-30, 2014

(This post is derived in its entirety from an article in the Examiner, available at:

Saturday, April 26, 2014

HIV/AIDS Bureau and HRSA Host Conference Calls Regarding Consolidation of Ryan White Parts C and D

On April 23 and April 24, 2014, the HIV/AIDS Bureau and the Health Resources and Services Administration hosted two conference calls/webinars: one for Ryan White Part D grantees and one for Ryan White Part C grantees.  The title of the calls was "Discussion of Critical Elements for the Funding Opportunity Announcement (FOA)."

Hosted by Laura Cheever, MD (Associate Director), Polly Ross, MD (Director), and Lynn Wegman, MPA (Deputy Director), the main two questions they wanted addressed on the call were:

1) What Part D services need to be included in the FOA, and
2) Documentation of service need.

It was made clear on the call that the "consolidated" program was going to more closely resemble Ryan White Part C than D, including the 75/25 requirement that does not currently apply to Part D.  Vigorous discussion were held both days, and advocates involved in Part D advocacy attended both calls.  The unclear, disappointing outcome only solidified the importance of pressing forward with our fight to #SaveRyanWhitePartD!

Slides from the webinars will be publicly available next week, and we will post them on our website.

Feedback/questions/comments about the elimination/consolidation proposal can be sent to the following email address:

We urge you to be VERY vocal about the loss of Part D!  Part C and D grantees are not in a position to do so even if they staunchly oppose the changes, but we don't have such limitations!  HRSA needs to know that WE oppose this!

Advocates from the 30 for 30 Campaign plan to schedule a follow-up meeting with HRSA at AIDS Watch next week to address Part D's elimination in a more assertive manner.  Stay tuned for details!

Tuesday, April 22, 2014

Services for Women Are Not Disposable! PWN-USA Responds to the President’s Budget Proposal to Eliminate Ryan White Part D

(This post was derived entirely from the Positive Women's Network-USA website.  The original post can be viewed here:

Services for Women Are Not Disposable! PWN-USA Responds to the President’s Budget Proposal to Eliminate Ryan White Part D

Contact: Olivia Ford, / 347.553.5174
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 ServicesAdministration (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.
PWN-USA urges stakeholders and allies to share this statement with your networks, and use our talking points to speak out about the proposed change. Check out the growing collection of Part D advocacy resources on our website; and sign up below to stay informed of our forward action to protect and augment care and services affecting women and young people living with HIV in the U.S.

The Women's Collective responds: "Ryan White Part D Funding: What about Women and Families?"

(This post was derived entirely from "Collectively Speaking," a weekly blog series of the Women's Collective.  The post can be viewed here:

Ryan White Part D Funding: What about Women and Families?

Family 1 SlideOn March 4, 2014 President Obama released his proposed budget for FY 2015. While his budget doesn’t go into effect without congressional approval, and it’s unlikely that congress will approve it without making any changes—the President made an important change in the way HIV related services are funded. The proposed budget condenses Part D of the Ryan White Program (which focuses on providing supportive services and medical services to women and families) into Part C (which provides comprehensive services without a focus on any specific group impacted by HIV/AIDS).
This proposal isn’t itself particularly concerning—Part D funds have always been very competitive and difficult to compete for so the compression of Part D into Part C may open up some new funding opportunities for community-based organizations (CBOs) that had been previously shut out of Part D funding. It also makes sense from the standpoint that there are less children being born with HIV and therefore a reduced need for funding those targeted services.
But we can’t forget about women and families.
The real concern with this proposal is the small part it plays in a larger movement in HIV/AIDS advocacy and funding that increasingly forgets about women and families and their unique needs and barriers. Language matters. Even though there are no funds being diverted out of the Ryan White program, removing “women and families” sends a problematic message about the focus of HIV/AIDS advocacy and services, who is living with HIV, and what their needs are. It lumps everyone living with HIV/AIDS into the same boat when they have distinctly different and complex needs—for women and families, those needs are often ignored.
There’s an argument that women and families served by Part D of the Ryan White program can get those same services through providers that receive Part C funding. That’s technically true. But those providers often don’t have woman-focused or youth-focused services that we know are effective. Women and youth may have a more difficult time articulating their needs and getting those needs met. As a woman-focused CBO, we have a first-hand view of what those needs are. Women aren’t just looking for access to quality health care or treatment. They’re looking for food so they can feed their families; housing so they can provide their families with stability and safety; employment so they can feel empowered to take care of themselves and their families; childcare so they can get to doctor’s appointments and to work; education so they can better themselves and set a good example for their families…
The needs of women go well beyond just taking medicine and adhering to treatment. As we lose focus on women and their needs, we are making it more difficult for them and families to enter and stay in care. The Women’s Collective urges the President and Congress to ensure that in the fight against HIV/AIDS, women are not left behind.
April 15, 2014

SOS: Save Our SCIENCE by engaging scientific and research communities to join w/advocates to #SaveRyanWhitePartD!

SOS-Save Our Science! We are working to engage the HIV research and scientific communities into Part D advocacy.

Ryan White Part D explicitly  mandates that its funded programs provide opportunities for women, infants, children, and youth to be voluntary participants in research of potential clinical benefit to individuals with HIV.  This unique mandate honors Part D's history as a maternal/pediatric HIV research demonstration project.  However, it also looks ahead toward a future cure, as many of the promising advances in HIV were birthed in the research realm.

Given that women, youth, and people of color are already severely underrepresented in domestic HIV clinical research, the changes to Part D could have a catastrophic effect on enrollment and retention of these groups.

With that in mind, we are strategically targeting various groups within the HIV research and HIV science communities in hopes that we can gain their support of our efforts to #SaveRyanWhitePartD.

SOS: Save Our SYSTEM; help maintain Ryan White Programs as a whole!

SOS: Save Our System!

We are working to help ensure that the entire Ryan White HIV/AIDS System is maintained, beyond Part D.

Even with ACA implementation, Ryan White programs still fill critical needs and save lives.  Ryan White has an important role to play in helping to get and keep people in care

To this end, we are collaborating with the Center for Health Law & Policy Innovation at Harvard on their Ryan White Stories Project. This project intends to collect and personal testimonies from current and/or former consumers of Ryan White services that will be shared with key legislators and also online to demonstrate the importance of the program.

The first phase of the project will launch next week at AIDS Watch!
Would you like to contribute a personal story about utilizing Ryan White services? We'd love to hear from you!  SOS!

SOS: Save Our SERVICES w/legislative outreach

SOS: Save Our Services!!!

We are ramping up our legislative outreach advocacy to help #SaveRyanWhitePartD.  Some of the ways this is happening is through:

Letter writing campaigns: The Colorado chapter of Positive Women's USA has spearheaded a statewide letter writing campaign urging leadership from their governor as well as support from their Senators and Representatives in order to #SaveRyanWhitePartD!

Other states are needed to follow their great example; will yours be next? Join in!

In person visits: Board Members of the AIDS Alliance for Women, Infants, Children, Youth, & Families will be assembling on the Hill THIS WEEK for additional legislative visits to advocate for Part D.  

Additionally, numerous advocates will be speaking about the need to #SaveRyanWhitePartD when they assemble in DC for AIDS Watch next week!  If you are going, please help amplify their voices! SOS!

Petition delivery!
The Deputy Director of the AIDS Alliance for Women, Infants, Children, Youth, & Families will be hand-delivering our petition to key members of Congress!  Our goal is to get to 10,000 signatures before the delivery date and we're almost there; will you help us get the final 1,750 signatures by sharing the petition far and wide? SOS!

Sending out an SOS to #SaveRyanWhitePartD!

Sending out an SOS to ‪#‎SaveRyanWhitePartD‬!

In less than one month (beginning May 15th), the US House of Representatives can start hearing reports about annual appropriations bills--including the HRSA budget that contains the changes to Part D. And before June ends, a finalized budget will be passed. The time to #SaveRyanWhitePartD is growing short and we are entering crisis mode.

As such, we are excited to launch a new #SaveRyanWhitePartD campaign that we mentioned earlier, SOS. SOS is a three prong approach; as such, we will be describing each part in three different posts. There are many, many ways that you can help; feel free to contact us to learn more about how you and/or your community can get involved!

(Photo courtesy of

Our New #SaveRyanWhitePartD Campaigns: "Why Ryan White Part D?" and "SOS"!

In our last post, we promised that we would later provide more details about our upcoming campaigns "Why Ryan White Part D?" and "SOS."

Today on Twitter we have began some of the "Why ‪#‎SaveRyanWhitePartD‬?" tweets, and beginning tomorrow we will be featuring at least one "Why #SaveRyanWhitePartD?" guest post every day on our blog!  The guest blogger will explain the important role that Ryan White Part D has played in their lives.  We will be featuring consumers, providers, and grantees in this campaign.

We will share about SOS in separate posts.  Stay tuned; you don't want to miss the exciting ways advocates all over the country are working to #SaveRyanWhitePartD!

Monday, April 14, 2014

What's Next?

The Flash Blog is over; what's next?"
-Anonymous commenter

Great question; glad you asked!

Yes, we are extremely proud of the success of yesterday's National Youth HIV & AIDS Awareness Day virtual protest #SaveRyanWhitePartD Flash Blog: No HIV+ Women & Children Left Behind!

(We had over 100 posts that throughout the entire day were featured on the Flash Blog site and cross-posted in various places on Twitter and Facebook, and we even attracted a little bit of media attention! And our petition has nearly 8,000 signatures!)

However, that's not the end. It's only the beginning.

We need to "keep at it" because we need Congress and the President to understand the importance of this issue. So, post-flash blog, our plans going forward include:

1. Heavily promoting the activities that various organizations in the community are doing specifically around Part D advocacy:

Holding a CAB meeting in your state related to Part D? Gearing up for a letter-writing campaign with your group? Got a community rally planned in your city? Were you recently quoted in a publication? Etc? We'll gladly post an announcement, the agenda, the minutes, pics, etc. This will not only help to feature your activities and demonstrate how many different people are involved, but it will help give other people ideas of what they can try to do in their areas as well.

2. Providing a central hub for sharing resources and communication:

Our official website is nearly completed and will be released in a few days. Aside from housing all of our social media endeavors in one place, it will also have direct links to all of the great organizations and individuals' pages that we've been in contact with concerning Part D advocacy. It will be updated regularly to add new people. We will also post links to helpful advocacy tips and toolkits.

3. Collaborating with existing leadership groups that are working in this issue:

We have connected with several experts in the field and are working cohesively to provide helpful feedback to them as well as incorporate their suggestions into our work. Many of them are established leaders in HIV advocacy, and it is both exciting and humbling to work with them! When possible, we will actively support their previously planned and future advocacy endeavors, i.e. AIDS Watch, conference calls, strategic meetings, etc.

4. Continuing to educate the public about this topic and obtain widespread support:

We will continue to speak at large and small venues, engage in targeted outreach, utilize list serves, and share on social media in order to inform the larger public about this issue and increase the size and reach of our allies. We will also continue to circulate the petition. There is strength in numbers!

5. Launching additional Save Ryan White Part D Initiative Campaigns:

We have upcoming campaigns in the works as well that we will be unveiling in the near future. One of them is a multi-media campaign led by Janet Kitchen of Florida entitled "We Exist." Others include a blog series tentatively named "Why Part D?" and a targeted outreach campaign entitled "S.O.S: Save Our Services/Science." We will reveal more details about all of these soon. We also hope to host additional conference calls as needed.

So...get ready, 'cause here we are! Thanks so much for your support thus far; with you on our team we will keep moving forward in our goal to #SaveRyanWhitePartD!

Thursday, April 10, 2014

The Flash Blog is LIVE!

Gooood morning! Today is National Youth HIV & AIDS Awareness Day, and our Flash Blog is well underway! Posts will be added at numerous intervals throughout the day. Please check them out at:

Thank you! No HIV + Women & Children Left Behind!

Tuesday, April 8, 2014

Press release: On 24th Anniversary of Ryan White’s Death, Advocates Express Concern Over Elimination of Ryan White Healthcare for Poor Women and Children

On 24th Anniversary of Ryan White’s Death, Advocates Express Concern Over Elimination of Ryan White Healthcare for Poor Women and Children

Houston, TX – April 8, 2014 – Diagnosed with AIDS at the age of 13 years, Ryan White spent his short life advocating for acceptance and services for people living with HIV/AIDS until his death at the age of 18 years on April 8, 1990. 

A few months after his death, Congress passed a bill providing comprehensive healthcare and services to low-income Americans living with HIV, named the “Ryan White CARE Act” in Ryan’s honor.

Ryan White programs provide primary medical care, prescription drugs, and a variety of supportive services to half a million people each year.

Many are astonished at the recently proposed elimination of Ryan White Part D, which funds family-centered services for women, infants, children, and youth.

In addition to eliminating the program and consolidating it with another (Part C), the President's budget proposes an increase of $4 million to the Part C program in 2015.

“It is NOT acceptable to place HIV+ women and families on the chopping block to save a buck, “ says Morénike Onaiwu, a Part D consumer and social justice advocate.

“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 in a recent press release by Positive Women’s Network –USA expressing concern over the proposal.

Several organizations are hosting “Save Ryan White Part D!” meetings, peaceful rallies, legislative outreach, and virtual campaigns in  various cities and states.

Social media is also being used, including a petition with nearly 5,000 signatures to date and active Facebook, Twitter, Blogspot, and Google+ accounts.

(Main) Morénike Onaiwu,
(Houston) Leslie Raneri,
(Houston) Sister Mama Sonya,
(Dallas) Marsha Jones,
(Dallas) J. Raheem Harris,
(Florida) Janet Kitchen,
(National/Policy) Ivy Turnbull,
(National/Policy) Olivia Ford,
#  #  # 

Monday, April 7, 2014

Gone Too Soon: Remembering Ryan White, 12/06/1971 to 04/08/1990

Today (April 8th) marks the 24th anniversary of Ryan White's passing at the age of 18 years old as a result of AIDS-related complications. 

Diagnosed at 13 with AIDS, Ryan and his family faced tremendous discrimination and stigma due to society's negative perceptions of people living with HIV/AIDS.

These experiences motivated Ryan and his mother to become staunch advocates for the HIV community and other groups. Ryan died a few months before the Ryan White CARE Act was passed, but his family (in particular his mother, Jeanne White-Ginder) remained involved in HIV advocacy circles, and are proud that this important program bears his name!

Ryan's story reminds us of how far we have come. But it is also a story of advocacy, of assertiveness, of not accepting the status quo. Ryan and his mother Jeanne refused to allow people, schools, or institutions to degrade and discriminate against HIV+ individuals and their families!

Read more about Ryan here:

We Need Your Help for Our Flash Blog this Thursday!!!

Please JOIN US for a flash blog to protest the elimination of Ryan White Part D (targeted healthcare services for women, children, and families affected by HIV in 40 US States, the US Virgin Islands, and Puerto Rico).

You can contribute from any and everywhere. You do NOT have to use your real name (but you are welcome to). You do NOT have to live in the US (but if you do, please share your city and state if you are comfortable, so we can indicate if you are from an area that would be affected by the budget cuts).

You can be of ANY age, and we will accept any type of submission: stories, poems, drawings, multimedia, essays, etc.

We welcome submissions from people living with HIV/affected by HIV, but we also welcome submissions from people who are not affected! Allies are welcome.

We ask, of course, that your submission is related to the vulnerable populations served by Part D: women, teenagers, infants, children, spouses, partners, and/or other family members whom are HIV+ themselves or have one more relatives that are. Often those at greatest risk are people of color, transgender individuals, those with socioeconomic challenges, etc. But what you share is up to YOU! Here are some ideas:

Share about your family, about yourself. Share about your hopes, your dreams, your accomplishments. Share about your struggles. Share about your community. Share about HIV, about gender, age, etc.

Share about the nontraditional families often found in HIV affected communities: single parent or grandparent-headed households, blended families, adoptive families, same gender parent households, foster families, emancipated youth.

Share about why you believe it's important for women, youth, and families to have access to healthcare and support services. "Support services" from Ryan White varies from transportation, childcare, case management, mental health, substance use treatment, housing, nutrition, peer mentors, education/training, community advisory boards, seminars, meals, and more.

Share drawings made by your children. Pictures of your families. Quotes that motivate you.

JUST SHARE! Send us your contribution no later than 5 pm on Wednesday, April 9, 2014!

Direct submissions and/or questions and comments to:

Sunday, April 6, 2014

Action Items Derived from Save Ryan White Part D Call to Action Conference Call

Action Items

 1. Outreach to outside groups:
            a. “Greek” organizations (fraternities/sororities)
            b. Faith-based institutions
            c. LGBTQA groups
            d. Social justice groups (i.e. women’s health organizations, YW/YMCAs, disability groups, public health groups, etc
            e. Human services programs (WIC, County offices, etc)
f. Various CBOs and nonprofits
g. Consumer groups (i.e. community advisory boards, support groups, etc)

2. Outreach to Public Officials: petition
            a. Help promote petition widely (every signature delivers the petition electronically to Congress and the President)

3. Outreach to Public Officials: In-person visits
            a. State Capitols (the 40 Part D states, plus USVI and PR)
b. White House
c. AIDS Watch

4. Outreach to Public Officials: Letter-writing campaigns
            a. Local (municipalities w/Part D funds)
b. State (the 40 Part D states, plus USVI and PR)
            c. Federal (Congress)

 5. Outreach to Public Officials: Email campaigns
            a. Local (municipalities w/Part D funds)
b. State (the 40 Part D states, plus USVI and PR)
            c. Federal (Congress)

 6. Outreach to Public Officials: Phone call campaign
            a. Local (municipalities w/Part D funds)
b. State (the 40 Part D states, plus USVI and PR)
            c. Federal (Congress)

7. Outreach to Public Officials: Twitter campaigns
            a. Local (municipalities w/Part D funds)
b. State (the 40 Part D states, plus USVI and PR)
            c. Federal (Congress)

8. Locating (or developing) an app for easier marketing of the petition/acquiring mass signatures

9. Additional social media outreach
            a. Use hashtag #saveryanwhitepartd as much as possible
b. Posting on your own pages and the Save Ryan White Part D pages
            c. Tweeting about Part D and retweeting Save Ryan White Part D tweets
            d. Contributing to the Save Ryan White Part D blog and flash blog
            e. official website is being developed; will incorporate all of the separate pages under one umbrella

10. Additional outreach to HRSA and HAB: Advocacy for the FOA Wording

11. Outreach to Ryan White Part D Grantees and Subgrantees

12. Utilizing a centralized list serve for Part D advocacy efforts

Save Ryan White Part D Call to Action Conference Call Summary

Save Ryan White Part D Call to Action Conference Call, 04/04/2014 10 am - 11 am

Draft Call Summary
Call Hosts: Save Ryan White Part D Initiative; The Resource Group

Call Participants
(Please send revisions if applicable.  Those in italics RSVP’d but didn’t announce themselves on call; will correct if not present.)

Morénike Giwa Onaiwu (Houston, TX)
Marsha Jones (Dallas, TX)
J. Raheem Harris (Dallas, TX)
Kim Nixon (Rutgers, NJ)
Janet Kitchen (Tampa [area], FL)
Eric Evans (Shreveport, LA)
?Kaeeta ?Modepsa (Los Angeles, CA)
Jean Starkey (Ft. Lauderdale, FL)
Reachelian Ellison (Houston, TX)
Patrick Martin (Houston, TX)
Olivia Ford (New Orleans, LA)
Danielle Campbell (Los Angeles, CA)
Connie Johnson (Chicago, IL)
Isaac Henry (Dallas, TX)
Danielle Houston (Houston, TX)
Marilyn Merida ?location?
Roseanne Malone (Rutgers, NJ)
Stephanie Montgomery ?location?
Betty ?Last Name? (Rutgers, NJ)
Denise Bent-Sanker (Houston, TX)
Flvaiah Namuwaya (Kampala, Uganda)
Deborah Levine (New York, NY)
Darlene King (Philadelphia, PA)
Nina Calbo (Atlanta, GA)
Mark Hawkins (Newark, NJ)

1. Morénike Giwa Onaiwu opened the call with a brief greeting and welcome.  She thanked everyone for joining the call and then announced other members of the Save Ryan White Part D Initiative that are serving as leaders for the group: Leslie Raneri, Janet Kitchen, Marsha Jones, and J. Raheem Harris, who subsequently introduced themselves. 

2. Call participants whom wished to introduce themselves were asked to do so; several complied.  Participants represented many different areas (2 countries, 9 states, 13 cities) as well as over 15 different organizations, including the following:

The Afiya Center; Dallas Awareness + Action Group; Black Treatment Advocates Network; 30 for 30 Campaign; Campaign to End AIDS; Positive Women’s Network-USA; Philadelphia Center; The Resource Group; Council to End AIDS Southwest; Advocacy Without Borders; Texas Children’s/Baylor Part D CAB; Houston Area Community Services; Positively U;?FXD/Rutgers; local Ryan White Planning Councils and Part D grantees.  

3. Patrick Martin then shared an overview of the Ryan White Part D and of the changes that are outlined in the new budget.  He described specific ways that Part D differs from other parts of Ryan White, including part C. 

Key differences mentioned include:

¨    Unique language in the legislature related to Part D’s targeted focus on family-centered care for women, infants, children, and youth in its provision of services;
¨    Part D’s exemption from the “75/25” rule (all other parts of Ryan White, including Part C, are required to spend a minimum of 75% of funds on core medical services and can only spend 25% or less on supportive services);
¨    Part D has an explicit requirement to support HIV clinical research and educate its clients about it: “Grantees must educate clients about research opportunities and inform all clients about the benefits of participation in research studies and how to enroll in them.” (Ryan White HIV/AIDS Program Part D Fact Sheet, 2013);
¨    Community-based nonprofit organizations comprise a sizeable portion of Part D grantees and sub-grantees.
Related Q&A and discussion occurred afterward.

4.  Next, Save Ryan White Part D Initiative leaders Janet Kitchen, Marsha Jones, J. Raheem Harris, and Morénike Giwa Onaiwu shared community activities that have occurred thus far to oppose Part D’s elimination and consolidation.  These activities include: petition; a peaceful community rally; several strategy meetings; educational campaigns; social media efforts; development of an FAQ related to this issue; contributing to a signatory letter authored by the 30 for 30 Campaign; visits to public officials; press releases, and conference calls.

5. Save Ryan White Part D Initiative leaders Janet Kitchen, Marsha Jones, J. Raheem Harris, and Morénike Giwa Onaiwu next shared future community activities that are planned.  These activities include: additional press releases; weekly focus meetings; participating in the “Austin Day of Action;” additional visits to public officials; a “#SaveRyanWhitePartD Flash Blog: No HIV+ Women & Children Left Behind” virtual protest; an audio-visual awareness campaign entitled “We Exist;” launching a website to serve as a central hub for everyone; and collaborating more effectively with other groups to streamline our efforts.

Related Q&A and discussion occurred afterward.

6. Olivia Ford summarized activities that the Positive Women’s Network-USA and the 30 for 30 Campaign have engaged in.  These efforts include: meetings and calls with decision-makers and stakeholders about Part D; creation of a statement and subsequent press release; a formal data request sent to the head of the HRSA HIV/AIDS Bureau (which funds Ryan White Programs); and developing advocacy talking points and resources.

Related Q&A and discussion occurred afterward.

7. Next, a discussion ensued about additional community efforts and connecting all efforts.  Key points raised during the discussion include:

¨    Ways to include people who wish to help with our cause, but have limited time, resources, and/or perceived influence;
¨    Ways to incorporate and engage people who are not “tech savvy” enough or don’t have sufficient internet access to sign online petitions, follow online updates and check/send emails;
¨    Ways to engage people in the greater community (outside of the HIV advocacy circles);
¨    The importance of these messages getting to public officials;
¨    The need for media attention;
¨    Ways to regularly connect with one another, work collaboratively, and not be duplicative in our efforts;
¨    The importance of making our voices heard so that if the consolidation unfortunately DOES occur, we have meaningful input so that the wording of the Part C FOA will contain language similar to Part D to ensure continuity for Part D individuals and families.

Related Q&A and discussion occurred next that addressed some of these points; from this discussion, several action items were identified.

8. Morénike Giwa Onaiwu noted that as the time allotted for the conference call was nearly finished, she would create the call summary as well as the list of the action items and distribute them to the group after the call.

9. Morénike Giwa Onaiwu provided an email address ( for those interested in being added to a list serve.  She also provided the URLs for the Save Ryan White Part D blog (, Facebook page (, and Twitter account (; inviting all to “like” and “follow.” 

10. The call was adjourned.
Action Items