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Public Comment provided by Art Jackson, C2EA Midatlantic Regional Co-Chair, to the Presidential Advisory Council on HIV/AIDS (PACHA)
Good Morning. My name is Arthur Jackson and I am here today representing the rural/small communities of the southeastern North Carolina. My reason for being here today is to speak about the issues affecting access to care in the communities in which I as a Bridge Counselor/Care Coordinator serve and see firsthand how these issues can have a devastating effect upon how we service clients. The main issues we face are transportation, lack of funding and recognition for community based programs that work, disproportionate amounts of funding going to bigger cities and a lack of real support going to smaller cities and rural areas, religious bias, STI criminalization laws and a lack of access to training for staff and consumers. These inequities force us to deal with low retention rates of clients, lack of adherence to medication and appointments, lack of understanding about the disease, self esteem issues and funding inequality that forces us to work with less yet have to achieve the same types of outcomes supported with more funding and training.
The issues we face with transportation are those that most communities in the south face. Due to a lack of a coordinated transportation policy, many clients have to find ways to keep appointments that are not reliable, cost effective and or are dependent upon them spending a majority of their day at the clinic. Because we have a network of care which consists of 9 different counties with only one with a public transportation system (in Fayetteville) our clients find that appointments are very hard to keep. Even with our Medicaid clients, we face many obstacles because there is no uniformity among them in their transportation policies, where some county DSS offices will provide some transportation and others don’t. Also getting transportation appointments with Medicaid to get you where you need to be at in time, has not always worked out the way it should. In trying to rectify this many clinics have tried working with cab companies or delivery services but have found that this takes a significant portion of their budget dollars that needs to be used in other areas. We must begin to look at alternative ways of reaching these communities such as mobile clinics that are able to go the places that often can’t be reached or can diffuse the need of traveling hours to make an appointment.
There are amazing, successful community based programs that are making a difference yet are not being funded statewide or federally. We have the oldest Prevention for Positive program in the State of North Carolina called Positive Connections that we have been doing since 2003. This is an 8 week program including lunch and transportation to and from the site. Our curriculum teaches about various subjects such as HIV 101, labs, adherence, nutrition, health and wellness, dental, mental health/substance abuse, hepatitis, safe sex practices, men’s & women’s health and the CDC Healthy Relationships intervention. This program has been instrumental to our success in reaching our clients and getting them to understand the vital role they play in their health care choices and our confirmed results have been for those who have completed the our program, is lowered viral loads and increased CD4 counts. These are the types of programs that should be funded and supported yet are not.
The issue of funding imbalance from big cities to smaller or rural communities also needs to be addressed. We have Charlotte and Raleigh in state that receives the bulk of major funding yet many rural communities or small cities don’t get access to the programs or trainings available in those larger cities or funded in levels that they can make a difference. This lack of support and funding is dramatic and leaves great swaths of the state without access to DEBBI’S, conferences/trainings or to network on a national scale. These trainings and conferences help improve the health of consumers and builds up and educates the staff that services them. There needs to be greater accountability from those programs funded and a way in which to support community based programs that are working, cost effective, community specific and making a difference.
Finding a way to bridge the gap between religious organizations and the consumers they serve is also a major issue. Due to the biblical stances many religious organizations have, finding a way for them to not only work with but affirm those that may be living with this disease can be a major obstacle to care and getting those clients to do the work necessary to stay healthy. The lack of affirmation and feeling as if they are not worthy of redemption can cause many clients to not deal with or face their diagnosis realistically, honestly and with the sense of purpose that is needed. By increasing outreach to Faith Based Organizations and building a relationship not based upon religious doctrine but upon the tenets that all people should be entitled to good healthcare no matter their station in life, religious belief or lack their of in a higher power or what their diagnosis is will be vital to decreasing this obstacle.
The south and especially North Carolina face many obstacles in the treatment and care of our patients. STI Criminalization laws are another serious matter that has impeded our ability to reach consumers. By branding our clients as criminals and treating them as such just by having HIV/AIDS has been a major roadblock. We end up losing many clients because they don’t like being labeled a health risk or if they believe they may have had some type of exposure to a STI they won’t come in for treatment for fear of being arrested and jailed. Legislating laws that criminalize having more than 4 condoms as solicitation of sex is just plain ridiculous and causes those of us doing outreach to have to hide the work we do from fear of being arrested, clients to not possess condoms and indulge in high risk behaviors that put them at risk for infections and a waste of resources all the way around. Looking at ways to modernize these laws now that technology has proven many of them to be antiquated and a burden to the work that we do should be on a national agenda. Separate and unequal is what these laws perpetrate and should not be allowed to stand anymore.
In sharing today I not only addressed some of the obstacles faced by many living and working in the community but I also recommended solutions that are cost effective and can go a long way towards decreasing the health disparities many face. By funding and supporting more community based programs that are making a significant difference in the lives of our clients and have shown to be cost effective we can reduce budgets and improve care. By finding ways to improve access through better transportation models and forging relationships that are cost effective, we can begin to address the low adherence rates in a meaningful manner.
If we are going to honestly look at ways to improve not just care but the model in which it is dispensed them I ask that you begin to have meetings throughout the region and listen to what has worked and what has not. This top down approach with no input from the communities being asked to implement these changes does not work. This top down approach that does not give equal access to trainings, funding and care are helping to build the disparities faced by smaller communities and rural areas. By not addressing the effectiveness of the past programs, who they are reaching, and if the outcomes are ones needed and only looking at the numbers of people served we miss many that can be reached but are not. Also the lack of people who live, work and are in care in the rural south that are not on these types of boards or committees are given no voice, and our issues are not being adequately addressed or heard and this has got to stop.
What we know is that what has been done is not working because we are seeing an increase in the rates of infection in the young Black MSM population. What we know is that those organizations getting the bulk of funding have not shown the outcomes needed and a more direct approach looked at. Community based programs that have peer outreach and are on the front lines needs more support. What we know is that in order for us to begin to decrease our rates of infections we need a better partnership with the federal, state and local governments, to begin to find more ways to work together, hold entities more accountable in not just how they dispense funds, but who they are going too and most importantly that they are meeting the outcomes necessary to decrease our rates of infection throughout the state. These suggestions can go a long way towards reaching the goal of ending new infections and teaching those infected the most effective ways of dealing with their disease.
Bridge Counselor/Care Coordinator