MN HIV Services Planning Council
Planning Council Meeting Minutes for
November 13, 2001
9:00 am to 12:00 noon
Spirit of the Lakes
Present: Absent:
Council members: Council members:
Judi Marshall (co-chair) Nick Metcalf - excused
Jerry Moss (co-chair) Michelle Sims - excused
Efran Tovar Leon Linda Brandt - excused
Megan Ellingson Norma Atuesta - excused
Frank Guzman Bob Olander - excused
John Whalen Ron Falcon - excused
Sheila Brunelle Don Anderson - unexcused
Sarah Rybicki Michael Alan Beyer - unexcused
Mary May Willie Bridges - unexcused
Helen Doris Reed Sandra Leaver - unexcused
Clarence Charles Steven Moore - unexcused
David Bergquist Timothy O’Brien - excused
Jim Huber
Debra Smith
Community members: Guests:
Bill Seed Dr. Tim Schacker – Delaware Clinic
Tom Thein – MN Men of Color
Sarah Senseman – West Side CHS
IGA: Staff:
Jennifer Thompson Mary Doyle
Eduardo Parra Wardell Thompson
Michelle McCafferty Becky Kroll
Julie Hanson Mary Dwyer (minutes)
Tracy Sides
I. Welcome and introductions
Judi called the meeting to order at 9:10 with introductions around the table.
II. Review of the minutes
MOTION: David moved and Judi seconded approval of the revised minutes.
III. Co-chairs report
Judi presented a brief co-chair report. Dr. Schacker gave his presentation prior to Judi’s report.
A. Attendance policy
The attendance policy has not been enforced in the recent past. Members are responsible for attending both committee meetings and Planning Council meetings. The attendance policy is going to be enforced in the future. The Operations Committee will be making some changes to the current policy and will bring it back to the Planning Council for discussion and approval.
B. MDH/DHS update
Title II admin function may be moving from MDH to DHS. On Thursday members from both agencies will meet to discuss and will then present to the Council at the December meeting.
IV. Medical update
Dr. Tim Schacker
Dr. Schacker presented an update about the HIV/AIDS epidemic. Much of the conversation related to issues identified by Dr. Schacker for consideration by the Planning Council. He reviewed the epidemic process and specified new research as well as points for intervention.
Viral load is how many copies of HIV have been made in the RNA per mil of distal blood. The CD4 cell is the most important cell for defending the body from HIV. HIV attacks the CD4 cell. When the body’s defenses are low the virus replicates. When the CD4 count fall below 200, full-blown AIDS is diagnosed - unrestricted viral replication is possible. When the virus is active the viral load increases and the CD4 cell count decreases. The goal of therapy is to reduce viral replication.
Discussion moved to medical management and the future of HIV/AIDS. Service planners are currently focused on symptomatic infection but the pendulum is swinging back to early detection. In the medical field there will be a much more significant impact if intervention occurs as early as possible.
There are four phases of the infection. They are acquisition, early infection, infection, and AIDS.
In terms of working with the acquisition phases the focus is on prevention. The medical methods of prevention include vaccines, condoms and education. There are new DNA vaccines being worked on (not the envelope – that won’t work). The new vaccines can prevent infection or hopefully contain viral replication – we’re still three to five years away from this. For the first time we can say that we’re actually ready to test these vaccines. Once you’re infected you’re infected for life. There is nothing that suggests someone infected can be cured. HIV is a chronic lifelong infection that needs to be managed. Condoms have been effective; they reduce the probability of transmission by 88%. Education – we need to tell people how HIV is contracted. People need to understand who’s at risk and be able to target interventions in a culturally specific way. Good education, culturally sensitive, appropriately presented information is key. There are many barriers to education including socioeconomic issues, etc. The key question for this stage is: “How will we deal with vaccines?”
Primary infection, this time period is 2 weeks to 3 months after exposure. By the time a person goes to doctor with AIDS symptoms, the virus is set and incurable. Earliest intervention could limit/abort/change the long-term prognosis of the infection if begun early enough. Shortly after exposure symptoms may start with a mono-like illness. Physicians should be asking if there is any risk of HIV and testing for HIV routinely for this type of symptom. Training physicians is an issue for dealing with early intervention. The percentage of people who are diagnosed during primary infection is unknown. Data is compelling that if you intervene at this point chances for slowing the progression of the disease are much improved. Dr. Schacker shared data about the studies being conducted. A 20-page consent form – because of many possible side effects needs to be presented to those in the study. This can be a deterrent to participation. Discussion continued about the demographics of who is represented in the trials and recruitment of participants who are reflective of those affected. This area is evolving rapidly. The key question at this stage is “How can we find and intervene appropriately with people who have been recently infected?”
The goal is to stop the virus from replicating – for those with really good CD8 responses. Rapid progressors usually have low CD4 cells, which make it hard to stimulate the CD8 cell production. This point is critical and illustrates why early intervention can keep the disease at bay. Another area looking at is cutting off some of the arms of the receptor to help boost other immunity properties. Dr. Schacker clarified that they will be using different therapies during primary phase and before.
The pre-symptomatic phase. One million to one billion viral particles can be produced every day. Every generation is mutated daily. If the virus is allowed to replicate and there’s drug nearby it can mutate to avoid that drug. This is one of the biggest problems of over-prescription of antibiotics because the virus replicates while the drugs are there. The therapy aims to keep the viral load as low as possible to reduce the chance of a drug resistant virus.
There are also lots of problems with medication adherence as it relates to other issues such as homelessness. Dr. Schacker tailors the regiment to meet the goal. He has the luxury of time in working with his patients. They are working with a cancer/chemotherapy model in defining this issue. It’s important to have the time and resources to really educate the patient and help them with decisions about treatment. A key question here is, ”How long can doctors take with each patient for education, etc.? It is necessary to set a universe and define objectives for the visit.
There was a question about structured treatment interruption. From a viral perspective, Dr. Schacker doesn’t think there is any benefit to this. His thoughts are that if treatment is stopped the disease may continue to advance. A Berlin study conducted had a patient who stopped treatment and didn’t have any more virus in their blood. No other study has been able to get the same results. NIH is currently conducting another study – an intermittent (every other day) program – all thirteen patients are doing really well and some toxicities seem to be reversing and have shown some other benefits. This study needs to be continued and monitored. In a few years we may be able move to a structured intermittent plan.
Last stage is AIDS – there are two important points here. One is failure of antiviral therapy (HAART Failure). There are three ways this can occur – not taking drugs as prescribed, not absorbing the drugs for some reason or the virus has developed some resistance. Up to 50% of people experiencing this are at this point in his clinic. Currently there isn’t a lot of data to show that resistance testing is effective at this stage. He believes there are better measures to track that. This may change when new data comes out about resistance testing. The other failure is a significant increase in OI’s (opportunistic infections) in advanced cases. The relationship of viral replication and early intervention is crucial in stopping progression of the disease. John asked about neurological progression, Dr. Schacker stated there are problems with some drugs not getting to the brain, which can bring on HIV dementia.
Three new drugs are being used – new protease inhibitor, fusion inhibitors, nucleotide inhibitor and pipeline drugs which are more plentiful have a different resistance profile than some of their neighbors.
The key goal is to reduce viral replication. There are viral barriers for each stage.
V. SAR review and discussion
Becky Kroll and Needs Assessment & Evaluation Committee
Judi explained that SARs are a component of the information we have relating to services. Facts to keep straight: we don’t have complete data, not everyone is in service, information is reviewed by service area not providers, the SARs will improve with age – we’re at a good starting point.
Judi asked if someone who is familiar with Case Management would explain what it entails – emotional support, group sessions to discuss individual needs are a very good channel when care is being monitored on a daily basis. If there is a need on a financial issue the case manager steps in to help as an advocate and to secure needed services. Jim described his vision – he would like us to get rid of the term case management and move to more of a concierge service. He believes the majority of people who are accessing programs are looking for a concierge. He hopes they will make that transition in the next three to five years. They are also working with some local universities and their social work programs to help develop this model of better social work education. John added the caveat of a problem-solving model as well. People’s right to self determination is the goal in Jim’s model.
Becky moved to the SAR for Case Management. She described the summarized data on the first page. Under context – the dollar amount should be $820,000 (not $82,000). David asked how many case managers there are – Jim will try to find out. Jennifer thinks that there are 30-35 people assigned to each case manager. Becky then moved to discussing outcomes – utilization of health care and meeting basic needs are the two goals defined for this SAR. Information has been collected at six month intervals and we’re on the third round of data. We have been doing this review longer, have better numbers which give more information. The majority of people in case management have insurance and a greater number have doctors. The numbers presented are that over 90% of those in case management are receiving services which is also way higher than the rest of the population. As for people keeping medical appointments, we see a different picture – it’s much more varied. When we look at these over a period of time we don’t see much change or improvement because of the target group factors. The two factors that affect this are housing instability and people who are currently chemically using. Tracy asked if there is a way that these people overlap. About 30% are in one target group and 12% are in both, 80% not in either target group are keeping their appointments. Based on what we’ve seen to date we don’t see any significant improvement so we looked at those who are currently using – some of the group looked at moved in a positive direction, some moved in the opposite direction and some stayed the same. This factor replicates itself in almost every area of outcomes. Another factor is the amount of time a person has spent in case management.
Discussion moved to Medication Adherence – Judi again asked that anyone with knowledge explain. Jerry shared that this is a very personal thing – knowing if people are taking the medicine every day in the right way. People need to make a commitment to themselves. David said what one of the biggest problems with medication is that people fail to understand the issue of HIV getting resistant. They don’t understand that HIV meds aren’t feel good pills. People need to understand and be involved in their own medical care so they become concerned about their care. Becky explained that there are three structured programs – which are expanding. The two outcomes identified are missing fewer doses and knowledge of medication. Can someone identify his or her medication? They have to remember the schedule and they need to explain the consequences of missing doses. Between time one and time two there was improvement in all of these areas. Meetings with staff, buddy systems and pill counting are some of the methods that various programs use to help with medication adherence. Many use supplies such as pillboxes, timers, watches and pagers. Funding goes to providing supplies. Barriers are changing meds, working for pay, emotional and mental challenges, people whose status is not known to others, active chemical use, lack of housing and changes in relationships. Reasons for not taking meds are sleeping, don’t have meds, skipped due to side effects, problems with time to take meds, people not knowing they take meds. Changes in CD4 counts and viral load have about the same degree of change. We have no consumer survey information because medicine adherence didn’t exist when the survey was done. Sarah Rybicki shared that in other areas (such as high blood pressure), adherence at 80% is great – in this field we’re trying to get to 95% which means we’re forging ahead. She also suggested that there might be other professionals who should be involved in medicine adherence, as opposed to doctors only. Some people want to hear it from other sources. Also, we don’t have any assessment – like a scale to ask about feelings, etc. It’s hard to devise a way to figure out what helps medical adherence because everyone is different.
VI. Title I and II updates
Title I update - Jennifer has copies of the grant application for people. The spending report will be available and discussed at the meeting next month.
Title II update - Julie has completed the SCSN and will mail copies out. She also has copies of the RFP out on health disparities.
Megan said her department, The Minneapolis Department of Health and Family Support, is providing technical assistance for people responding to the RFP – their goal is to have many proposals coming in from Minneapolis.
VII. Operations update
Mary asked members to fill out the form for minutes distribution so we can have that on file. Sarah suggested we email when minutes are posted on the website. Mary then gave information about the Hennepin County Health Disparities Conference. Mary asked for feedback on the space. Mary proposed that we meet at MAP next month and we will explore new options.
Working Groups update. The members of the two working groups have been invited to participate. The MDH temporary position for the working groups consultant has been posted and interviews will be held next month.
VIII. Committee Reports
A. Planning and Priorities Committee
Mary gave the P&P update. Working on the plan for developing the Comprehensive Plan. Not meeting December 5th because of the conference but will be meeting November 21st and December 19th.
B. Needs Assessment and Evaluation Committee
Judi gave Sheila’s written report – a discussion of Juan and Becky’s SAR reviews including the idea of engaging people in discussion more, including the idea of reviewing trends for future service areas, a discussion of the committee workplan, and a discussion of other research studies that are being developed that we can analyze in terms of unmet need. The Needs Assessment and Evaluation Committee will be leading the Planning Council discussion about SARs.
C. HIV+ Committee
Focusing on planning this year – delineating roles of other committees and how the work is distributed. They are currently working with the training schedule so they can get members up to speed prior to the upcoming meetings. Jerry asked that fliers and other information being distributed out into the community be passed through the Executive Committee for approval first.
D. Operations Committee
We have the website to be viewed for those who want to see it. The meeting time will stay the same. We’re working on orientation of new members, the attendance policy and location of meetings.
IX. Announcements
Wardell announced the plans for World AIDS Day on November 30th. He appealed to everyone to please try to participate at the evening conference on November 30th. Debra and Wardell discussed the format planned at the Convention Center.
Adjourned at 12:10 p.m.
MN HIV Planning Council website available for preview