Planning Council Meeting Minutes May 30, 2019

HIV HEALTH AND HUMAN SERVICES
LGBT Center, West 13th Street, New York, NY
Thursday, May 30, 2019 3:05-5:05 PM
MINUTES

Members Present: J. C. Park (Governmental Co-chair), M. Lesieur (Community Co-chair), S. Hemraj (Finance Officer), A. Abdul-Haqq, F. Barrett, L. Best, A. Betancourt, R. Bruce, P. Carr, A. Casey (for G. Harriman), E. Casey, B. Cockrell (by phone), M. Diaz, B. Fields, T. Frasca, MPH, C. Graham, J. Hudis, C. Kunzel, Ph.D. (by phone), A. Lugg, M. Mañacop, L. F. Molano, M.D., D. Powell, C. Reyes (by phone), S. Reyes, A. Roque, J. Schoepp, C. Simon, M. Singh, B. Zingman, MD (by phone)
Members Absent: M. Bacon, K. Balovlenkov, M. Baney, D. Beiling, R. Chestnut, M. Domingo, J. Dudley, J. Edwards, B. Fenton, MD, S. Grant, B. Gross, J. LiGreci, J. Maldonado, O. Lopez, M. Mackey, J. Natt, A. Straus, M. Thompson, D. Walters
Staff Present: DOHMH: D. Klotz, J. Colón-Berdecía, A. Guzman, A. Thomas-Ferraioli, K. Mack, T. Gardet, K. Miller; Public Health Solutions: G. Kaloo; WCDOH: J. Lehane, PhD; NYSDOH: J. Morne; J. Corbisiero (Parliamentarian)

Mr. Park and Mr. Lesieur opened the meeting, followed by introductions and a moment of silence. The minutes of the April 25, 2019 meeting were approved with no corrections.

L. Ruiz announced that there will be a “GENDA Know Your Rights” training on June 11th . Participants will learn how to identify what is considered discrimination and how to report instances of discrimination in all aspects of life under the Gender Expression Non-Discrimination Act.

Ms. Barrett introduced the draft MOU between the Recipient (Grantee) and Planning Council, which the Rules & Membership Committee (RMC) spent over a year and a half carefully reviewing line-by-line.  The MOU also went through extensive negotiation between the RMC and the Recipient staff.  The document, along with the Planning Council Grievance Procedures, was vetted by our HRSA Project Officer and the DOHMH Legal Department, and was approved unanimously last week by the Executive Committee.

Mr. Klotz reviewed the content and timeline of the MOU.  The purpose of an MOU was described: a legal agreement between the Council and Recipient (new HRSA term for Grantee) that describes the partnership, delineates roles and responsibilities, operationalizes existing Federal, State and Local governances, and is a tool to help stakeholders avert conflict.  The Council’s and Recipient’s roles were described in the areas of Setting Priorities, Allocations (including use of unspent and unobligated funds), Assessing the Administrative Mechanism, Council Operations, Grant Administration, Grant Writing and Reporting, Quality Management, Determining Needs, Comprehensive Planning, Program Evaluation, Communication and Information Sharing, and Settling Disputes. 

The process for revising the original 2011 MOU involved extensive RMC meetings led by Ms. Barrett starting in March 2018.  RMC members went line-by-line through the MOU making extensive revisions to make the update the document and give it a more collaborative and cooperative tone.  The revised document was reviewed by Recipient staff, who then joined RMC for several meetings to negotiate points of disagreement and come to a final draft.

A summary of the revisions include:

• Technical changes: Terminology (e.g., “Grantee” now “Recipient”, as per new HRSA terminology); RW HATEA language; Changes in reporting (e.g., Council reports to Deputy Commissioner of Disease Control); Comprehensive planning per federal guidelines.
• Allows Council staff to review draft RFPs to ensure consistency with Council guidance.
• Clarifies communications: Formalizes procedure for data requests, Communication with HRSA project officer at PO’s discretion.
• Ensures that Council members can access public information about individual providers, but not use it in the context of the planning process. The Recipient provides provider-level information for planning purposes only (e.g., to invite providers to IOC meetings to discuss service directive revisions).
• Rationalizes Shared Reports: Quarterly finance reports in a realistic timeframe; Substitutes the annual HRSA Progress Report for the Federal Financial Report; Council produces annual work plan; Recipient responds to data and reporting requests in set, realistic time frames (e.g., within 30 days of finalized formal request)
• Once the Council ratifies the document, it will be signed by the Council Co-chairs and Recipient representative (Mr. Harriman) and become a tool for continuous improvement of the Council-Recipient relationship. 
• Ms. A. Casey, in response to a question from Ms. E. Casey, noted that the Recipient’s own grievance procedures cover the process by which a council member may file a complaint about an RFP, but the Recipient wanted it referenced in the MOU, but the method will be spelled out in the Council’s Policies and Procedures Manual. 

Ms. Barrett moved on behalf of the RMC, moved that the Council accept the revised MOU as presented.  The motion was adopted by a vote of 24Y-0N. 

Mr. Klotz gave an overview of the revised Planning Council Grievance Procedures.  The Ryan White legislation requires planning councils to develop procedures for addressing grievances with respect to funding under Part A and for resolution of grievances through progressive steps that lead up to binding arbitration when grievances cannot otherwise be resolved.  These relate only to Council decisions, and not to issues that consumers may have around services at an agency (the Recipient and Public Health Solutions have procedures for those issues).  The current Grievance Procedures were approved in 1997.  After HRSA’s site visit in March 2018, the EMA was informed that revised procedures were needed.  The RMC met from February-April 2019 (after completing work on the MOU), and draft based on model procedures in the HRSA Part A Manual, and best practices from other EMAs.  A draft was approved by RMC and submitted to HRSA and DOHMH Legal in March 2019, and their comments incorporated into the final draft by RMC April 29, 2019.

The first item in the procedures addresses “Standing” (who may bring a grievance): Providers eligible to receive Ryan White funds; Consumer groups/people living with HIV (PLWH) coalitions and caucuses; the Planning Council itself or individual Council members; and Individual PLWH who are eligible to receive Ryan White services.  The next item is “Basis” (who may bring a grievance): Deviations from the Council’s established, written priority-setting or resource-allocation process (e.g., failure to follow established conflict of interest procedures); Deviations from an established, written process for any subsequent changes to priorities or allocations; Membership and appointment process. 

Step 1 in the Grievance Procedure is Filing a grievance, which requires the grievant to complete a form and submit it to Council staff (within 20 business days of the disputed action).  The grievance is then referred to the Community Co-chair who meets with grievant (5 days), determines standing and basis (10 days).  It was noted that if the Community Co-chair is unavailable, the Finance Officer (as per the Council Bylaws) acts in his/her stead.  The Executive Committee agreed to add to the draft procedures that if neither office is available, the clock will start when one becomes available.  If no standing and basis found, grievant can appeal (5 days) to an RMC Panel (5 days).  If Standing and Basis is found, the process goes to Step 2: Informal dispute resolution: Referral of the matter to the appropriate Council entity, e.g., PSRA for allocations issues (30 days to address with grievant).  If it is still not resolved, it proceeds to Step 3: Mediation.  The grievant can request mediation (5 days), upon which a non-conflicted third party is engaged (20 days) and the mediation meeting takes place (10 days).  If there is no resolution from mediation within 3 business days, the parties proceed to Step 4: Binding Arbitration (grievant must request within 5 business days).  The American Arbitration Association (AAA) will be engaged.  AAA has a filing fee (currently $200) payable by the grievant (consumers are exempt and their fees covered through the Council’s administrative budget).  An AAA representative sets a meeting of parties and renders a decision (21 days), which is final and must be accepted by all parties. 

Actions taken in resolution of grievances shall be applied prospectively, with regard to funding issues, and thus will not include reversals of previously established priorities or allocations.  There are also Confidentiality and Non-retaliation Protections in the procedures.  Ms. Best noted that, while it is important to have these protections written down, it may not completely protect someone from negative consequences of filing a grievance. 

Ms. Barret, on behalf of the Rules & Membership Committee, moved that the EC accept the revised Grievance Procedures as presented with revisions.  The motion was adopted 24Y-0N.  

Ms. Barrett and the RMC members were thanked for their outstanding and diligent work on the MOU and Grievance Procedures. 

Ms. Morne gave an update on the NYS ETE metrics and activities.  Among the many existing State Health Equity-related activities are: HIV Quality of Care Program, LGBT Health and Human Services, Criminal Justice Initiative, Communities of Color Funding, Transgender Healthcare Services, Deaf Pilot, Faith Communities Project, PLWH Leadership Training and more.  Activities to address stigma in healthcare settings include: stigma survey administered to staff members at 50 health care sites in NYS; feedback solicited from consumers; sites created stigma reduction action plans based on results; increasing staff education; creating a more welcoming, inclusive environment; structural and policy changes; and NYSDOH AI & Better World Advertising teaming up for a U=U media campaign.

While trends show a marked decrease in HIV incidence and outcomes since the ETE campaign was first discussed in 2013, there is still work to do.  The ETE goals call for reducing the number of new infections Statewide by 2020 to 750.  As of 2018, the number was 2269 (down from 3347 in 2013, a 32% decrease).  By the end of 2020, ETE seeks to achieve fewer new HIV infections than deaths, resulting in the first ever decrease in HIV prevalence and the end of AIDS as an epidemic in NYS.  The difference between new infections and deaths has decreased from 2013 to 2017 from 1239 to 724.  There has been an 18% decrease in new HIV diagnoses in that period (the ETE goal is 55% by 2020).  New diagnoses have fallen steadily among Black, Hispanic and White people, but have stayed relatively steady among Asian/Pacific Islanders, albeit the absolute numbers are relatively small.  MSM still make up the vast majority of the newly diagnosed, followed by Heterosexual.  The number of IDU transmissions has fallen dramatically.  There still needs to be more work to bring the diagnosis rates down for both Transgender Females and Males.  

ETE goals call for an increase the percentage of newly diagnosed persons linked to HIV medical care within

30 days of diagnosis to at least 90% by the end of 2020.  From 2013 to 2017 the number has increased from 69% to 81%.  With the work being done in the NYC Sexual Health Clinics, there is an expectation that the 2018 numbers will show an even more dramatic increase.  ETE goals by the end of 2020 call for an increase in the percentage of individuals living with diagnosed HIV infection and receiving any care with suppressed viral load to 95%.  From 2013 to 2017 the rate has increased from 81% to 87%.   The resurgence in syphilis is of great concern, as rates of HIV and syphilis co-infection are high.  Rates of other STIs have also increased.  Hepatitis C infection is also increasing due to injection drug use, but with curative therapies now available, both NYS and NYC have major initiatives to increase access to HCV treatment.  Harm reduction initiatives for IDUs also include Naloxone and Buprenorphine access, syringe services, drug user health hubs and mobilizing local public health agencies.  

The HIV Uninsured Care Program (now renamed “Uninsured Care Programs” to reflect its broader mandate) have made HIV and HCV treatment more accessible through several important changes in regulations, including increasing the income threshold to be equal to or less than 500% of the FPL for the applicant’s family size, eliminate the inclusion of liquid assets as a resource and eliminate the 50% employer share of cost requirement for premium payment assistance.  As of July 2018, 92% of active ADAP participants for the period of 8/1/2017-7/31/2018 are virally suppressed.  In Calendar Year 2018, the Uninsured Care Programs enrolled over 2,600 participants in PrEP assistance. 

ETE Community Collaborations were described, such as the regional Steering Committees, Advisory Groups and NY Links.  Planning bodies are also reconvening with the ETE Steering Committee to monitor the progress of implementing the Integrated Plan.  

A summary of the ensuing discussion follows:

• There needs to be a stronger focus on youth and stigma, particularly in prevention activities.
• The State is doing research on cause of death among PLWH.  More research needs to be done about the long-term effects of HAART use and HIV-related issues in aging.  
• The ETE continues to focus on disparities in communities of color and areas of poverty. 
• While hepatitis C rates are increasing from injection drug use, HIV rates are not.  A possibility for this may be the use of PrEP, but the State is looking at learning more about this trend.
• ETE is working on creating greater awareness of sexual health among all providers.
• There are conversations around safe injection sites, but the State is not in a position to take action on this issue yet. 

Mr. Guzman and Ms. Thomas-Ferraioli gave an update on national, state and local HIV policy issues.  New York City Council Speaker Corey Johnson unveiled “Fix the System,” a series of criminal justice system reform proposals, two of which relate to people involved in the sex trade: a City Council resolution in support of repealing the loitering for the purpose of prostitution state law; and funding to create a comprehensive wraparound support center for people engaging in survival sex or who have been trafficked.  Mr. Guzman reviewed proposed HIV-related federal appropriations: the administration has proposed a total of $186M in new funding and the House has proposed $203M ($70M and $116M respectively would go to Ryan White, most of the rest to CDC for prevention). 

On May 21, 2019, the U.S. Department of Health and Human Services (HHS) published “Protecting Statutory Conscience Rights in Health Care,” a notice of its final rule, which would allow health care providers to deny services to people based on their religious beliefs.  That day, City Hall announced the city had joined a coalition of 23 other cities and states in a lawsuit seeking declaratory and injunctive relief with regard to the rule. The City Hall press releases states, in part: In an unprecedented and unlawful expansion of nearly 30 federal statutes, the Refusal-of-Care regulation puts providers above patients at a dangerous price: it could undermine the City’s ability to administer its health care systems and deliver patient care effectively, efficiently and without prejudice. 

In Nov. 2018, HHS had proposed amendments to Medicare Part D prescription drug policy that would have reduced access to the six protected classes of drugs, one of which is antiretrovirals (ARV).  In January, the NYC Health Department and Department of Social Services/Human Resources Administration submitted a comment opposing the proposed changes as relates to HIV ARV drugs.  In May, HHS published “Modernizing Part D and Medicare Advantage to Lower Drug Prices and Reduce Out-of-Pocket Expenses,” a notice of its final rule. The rule does not reflect the proposed amendments related to the six protected classes of drugs mentioned above, meaning that HIV antiretroviral drugs will continue to enjoy protected class status for Part D enrollees. In May, Gilead and HHS announced that Gilead will provide the CDC with PrEP medication for up to 200,000 uninsured Americans annually through 2030, for a total of up to 2.4 million bottles per year.  Gilead will donate Truvada initially, but will switch to Descovy following FDA approval for use as PrEP.  Descovy donations will continue through 2030 or until a generic version of it becomes commercially available, whichever occurs first.  Most donations will likely be to individuals in states that have not expanded Medicaid, particularly to counties and states targeted in the Ending the HIV Epidemic: A Plan for America.  In May, the House Committee on Oversight and Reform held “HIV Prevention Drug: Billions in Corporate Profits after Millions in Taxpayer Investments,” a hearing on Gilead’s Truvada pricing and whether the public is receiving an appropriate return on its investment following taxpayer funding that led to FDA approval.

Mr. Park noted that Gilead is making huge profits on Truvada and that the community should continue to push for lower pricing to make this life-saving medication universally accessible.  

There being no further business the meeting was adjourned. 

Minutes approved by the HIV Planning Council on June 27, 2019