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: Change.org 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 (SaveRyanWhitePartD@gmail.com) for those interested in being added to a list serve.  She also provided the URLs for the Save Ryan White Part D blog (http://SaveRyanWhitePartD.blogspot.com), Facebook page (http://www.facebook.com/SaveRyanWhitePartD), and Twitter account (http://twitter.com/SaveRyanWhitePtD); inviting all to “like” and “follow.” 

10. The call was adjourned.

Action Items