MN HIV Services Planning Council
Meeting Minutes for May 18, 2004
All God’s Children Church

 

 

I.       Welcome and introductions; lighting of the candle

Paul called the meeting to order at 9:15 a.m.  Gwen lit the candle in memory of all those who have gone before us and the people we are representing today.  She hopes that all will remember how important our work is, that there will be some consensus and we will be able to move forward.  Introductions were made.

 

II.     Approval of proposed agenda

The agenda was approved by unanimous consent.

 

III.   Co-chair update

Paul shared that he would like to set the context for the work to be done today.  This needs to be viewed as a part of the prioritization because ADAP changes may impact how funds are used.

 

Sarah added that in this situation there are some specific Planning Council presentations being done but they are interested in hearing the perspectives of others in the community.  Actions that are not Planning Council specific may come out of this meeting as well.

 

IV.     ADAP update

Dave addressed a request made by Ron Schut to look at the last couple of year’s budgets for ADAP and Title II.  They are preparing that information and will have it available for review in a week or two.  He also reported that the $113,000 in flex spending that ADAP uses to fund medication adherence will no longer be available as of July 1.  Because of the program changes to ADAP, flex spending is no longer allowed under HRSA regulation.  Concerns were expressed about the delay in time for getting the requested budget information and it was requested that information be distributed as widely as possible.

 

V.                 How the Needs Assessment can help us make ADAP decisions

Paul then said that decisions regarding ADAP might impact prioritization.  With the ADAP changes, it is very important to begin with a needs assessment. This session was also audio taped.

 

VI.             Needs Assessment overview, including economic status of PLWH/A in MN

Becky shared that the needs assessment survey was conducted in the summer of 2003 and 242 people were interviewed.  Becky then reviewed the demographics of those interviewed, including a brief description of demographic areas that may be over or under represented.  Half of the people interviewed were living on $800 a month or less, which is approximately 100% of the federal poverty guideline (FPG).  The majority of those who have not been working had a change in their job status between 2002 and 2003.  Fifty-five percent of those interviewed have been homeless at some point in their life.  Thirty-one percent of those interviewed miss one to five medical appointments due to transportation problems. 

 

Becky then reviewed themes that were identified when folks were accessed about the length of time it took for them to get to a doctor after being diagnosed.  She further reviewed results found when asked about barriers to care, how needs are being met, and self rating of overall health, including current viral load and CD4 counts.  Consumers interviewed ranked emergency financial assistance as their number one priority, moving primary medical care to second place.

 

Becky then fielded questions.  It was reiterated at several points that this survey was conducted before many changes were made to state funded insurance programs last fall.  Some offered that even with small costs associated with drug copays, as one example, still impact monthly income dramatically.

 

VII.   Overview and history of ADAP

Bob Tracy gave an overview of ADAP beginning with the history of drug assistance programs that have been available in the state.  In 1987 a program to pay for AZT was enacted.  Then in the early 90’s, in an effort to increase access to medical care, Senator Linda Berglin authored a bill to continue insurance coverage for folks living with AIDS.  In 1995 more drugs became available and Minnesota became eligible for Ryan White Title I funds.  ADAP has grown over 1000% since 1996 ($52 million then compared to $748 million in 2004).  At the state level there was a $4 billion cut last year that resulted in cuts to HIV prevention, substance abuse treatment, Minnesota Care, and general assistance medical care (GAMC).  Shifts were also made as the ADAP drug rebate reserve replaced state insurance reimbursement general funds and general fund money was used to set up a new senior/disability drug program.  The impact is that 65% of people living with HIV are being shifted to a cost-share program. 

 

Bob then discussed options available to the Planning Council.  The first shift Bob discussed is to shift the current use of the Ryan White funds which would cut important services/ benefits, shift focus for EFA (i.e., folks would need help paying for cost sharing), and has an impact on private funding sources.  His point was to make good choices about putting public money in places that private funding sources wouldn’t fund.  He then raised the issue of the Ryan White CARE Act’s reauthorization that will happen in 2005.  His point is that the CARE Act was developed based on the epidemic as it was in the 80’s and this may be the time to change programs.  He also mentioned the IOM report that was released last week as an example of how to look at health care provision in the future.  Another option Bob posed was to look at Medicaid.  Early Treatment for HIV Act (ETHA) would hope to expand benefits available under Medicaid programs and would be put in place to work with folks as soon as they are diagnosed positive.  He suggested that a more effective use of energy would be to focus on changes to the CARE Act reauthorization as opposed to continuing to work with reduced funds.  Bob encouraged folks to get involved in grass roots activism to help make systemic changes.  He further offered that many would have dual roles in helping to affect these changes.  Folks may not be able to say some of the things that need to be said around the table but there are other ways to get that message out. 

 

BREAK

 

Lee asked for a few moments of time to address members.  Another area that’s being hit fairly hard is subsidized housing.  There is a rally this afternoon in response – 920 South 2^nd Avenue at 2:00 p.m.

 

VIII.    Planning Council ADAP Strategy Development

Sarah shared that there is limited time to finish this discussion in this meeting and offered that this was the time to begin by identifying the problem.  The Planning Council does have some time sensitive information that needs to be dealt with.  All of the problems don’t need to be identified or solved today.

 

A.                Identify the problem

Sarah asked folks to offer their definition of the problem.  They were,

·        Cost sharing measures, which are too high, being put in place make it prohibitive for folks to work. 

·        No new taxes per the Pawlenty administration.

·        Cost share structure may create situations that leave folks “medically in the hole” because of no access to drugs.

·        DHS staff capacity has not been altered to address the changes in funding available.

·        Attitude that material being distributed sends a message that there is a lack of trust because folks have to pay premiums in advance of use.

·        Delays in treatment may occur because of the stress involved in dealing with paying premiums

·        Look at the erosion of GAMC and other state medical programs – those changes began to create the huge impact on benefits and are a much larger pot of money

·        How this fits with prioritization

·        If premiums lapse, to be reenrolled the applicant will have to have a case manager – are there enough case managers to fill this role?

·        How much is cost sharing actually going to provide?  Will it actually cover the gaps and does it justify enacting cost sharing?

·        Big system issues are also immediate issues – does the Planning Council want to be a voice for small system changes or larger system responses

·        The legislative session ended – there is still a $2.1 million shortfall which may have a larger impact than the cost sharing impact

·        There’s been a sea change in expectations of public health care programs – if there isn’t action now changes will continue as the base for funding decisions

·        Ability to use Ryan White emergency financial assistance funds to help folks with cost sharing – maneuvering around HRSA’s regulations vs. state’s reimbursement program (there needs to be clarity about the rules both federal and state)

·        Future deficit that will be coming up in the next session needs to be taken in

·        Lack of transparency in ADAP budgeting

·        Creating other ways to help solve the problem will absolve DHS’ responsibility to be accountable for their programs

·        Medication costs are so much higher in the United States than in other countries – pharmaceutical companies have much control (the Governor is looking to allow state employees to buy drugs from Canada) – caution was offered that folks need to do research on this option, there is much uncertainty about the content of those meds because there is no FDA regulation (false and fraudulent products are often sold)

·        Clients won’t receive adherence services after June 31^st

 

B.                 What is the Planning Council role/responsibility/authority?

 

C.                 What is the desired outcome/timeline for action?

 

D.                Develop options for action – possibly in small groups

Lee suggested that this needs a two-prong approach – how do we respond to cost sharing and how do we address some of the longer-term system changes that need to happen.  Dave said concerns of cost sharing could be addressed at forums or at the end of this meeting.  He also added that the Planning Council needs to define what their role is and how they want to define that role – in the past a lot of information on ADAP hasn’t been requested.  He also said that from an action standpoint he sees the additional $2.1 million deficit as an important issue.  Some of the options discussed are freezing the program and going to a waiting list, reducing eligibility to below 300% over poverty, addressing the Planning Council’s potential recommendations.  The reality is that by July things will have to be figured out.  Sarah S. said there are longer-term things that need to be worked on but there are immediate, pressing needs that need to be addressed and she hopes that she can walk away from this meeting with an action item.  Paul shared a discussion from the break that it may be appropriate to meeting with DHS’ Commissioner to have a discussion about how to move forward.  Dan asked what the status of current funding is and if there is a way to shift funds that are currently allocated.  Jonathan said there might be some carryover to look at using (which HRSA would have to approve); we’re currently at the end of the first quarter for the grant year.  LeMonte asked for more information about using emergency financial assistance (EFA) – this is an option he hadn’t heard before.  Michelle clarified that it could fund cost sharing but would take away from other eligible services.

 

Bob suggested it might be helpful to develop a clearinghouse number for folks to get information from and to be able to air concerns with.  He added that one piece was lost with respect to how communication occurred through this process, the community was left out of the loop – a path could have been developed to get information out in a clear way.  Eric said we need to articulate our position so folks have something to take with them, rather than being silent.  Gwen added that clients got information before providers did so it has been very difficult to work with folks and how they should be responding to questions and concerns.  She further stated that that piece still needs to happen.  Dave said if folks still feel that they don’t have enough information DHS needs to know what the problems are.  He also suggested a letter to the Commissioner and Assistant Commissioner to fund the shortfall internally adding that there is a commitment from the Planning Council to partner on working on the solution to the funding issues.  Dan added that part of the letter needs to address factors affecting other systems (i.e., nursing home residency, loss of income due to inability to pay cost sharing premiums), which impact independent living ability, citing information from the needs assessment to help support the arguments.  Eric raised a concern that the needs assessment is not a representative sample so he cautioned quoting specific numbers.  MOTION:  Sarah S. moved Eric seconded that the Executive Committee write a letter to the Commissioner and Assistant Commissioner of DHS reflecting the concerns expressed above.  FRIENDLY AMMENDMENT:  Troy offered the amendment that the letter request a meeting with the Commissioner.  Dave suggested adding the issues of adherence and some of the other concerns that have been raised at today’s meeting.  Dan suggested having a member of the legislature be at the meeting as well – his experience is that has a lot of influence.  FRIENDLY AMMENDMENT:  Lee offered that an ad hoc committee be convened to write the letter and identify the people that will be asked to attend the meeting with the Commissioner.  The draft letter will be emailed to all Executive Committee members for approval before sending it on.  Passed unanimously.

 

E.                 Evaluate options

 

F.                 Choose option(s); develop plans and timeline for implementation

 

Sarah R. asked members to consider how the rest of the discussion will continue.  Many points have been identified that could be addressed and a very short period of time.  Gwen asked for clarification of what the role of this group is.  MOTION:  Gwen moved Sarah S. seconded forming an ad hoc committee to continue the discussion that began today that will define the role of the Planning Council and it’s proposed approach to address the shortfall.  That ad hoc committee will report back to the Executive Committee at their June 3^rd meeting.  Passed unanimously. 

 

IX.            How will ADAP issue affect the Planning Council prioritization?

Develop quick process plan

 

X.      Announcements, next agenda, meeting evaluation

Debra announced that the current Celebrating Your Spirit forum tonight will focus on this specific issue.  The forum is at Park House from 6:30 to 8:30 p.m. tonight.

 

Documents distributed at or before the meeting:

·        Agenda

·        AIDS Drug Assistance Program (ADAP) Fact Sheet

·        Meeting overview and goals

·        DHS Program HH Premium schedule

·        2004 Needs Assessment available

 

 

Adjourned at 12:10 p.m.