The ACA provides Americans—including those at risk for and living with HIV/AIDS—better access to healthcare coverage and more health insurance options.
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I was not interested in treatment when I was first diagnosed back in 1991. I had no knowledge of medication and when I tried to go to these so called clinics back then I felt like I was treated like an animal. Those doctors would cover every inch of their bodies and wear mask just to exam me. So my attitude towards treatment and health care was not a good one. As time went on and more people were living instead of dying with this disease I decided to get into treatment in 2000. This was eleven years after being diagnosed. Believe me things have changed. There are so many new medications out there, research, advertisements, commercials and campaigns like our HSWM. Healthcare providers are well educated and no longer make PLWHA feel like outsiders they are more compassionate and they encourage us to stay in treatment so we can live longer. I educate myself by reading, brochures, attending community meetings, engaging in programs for people living with HIV, watching commercials, and of course using social media. My attitude is a good one that is why I am still living proof that we can live with this disease.
The reason I moved from South Carolina to New York was for better healthcare. Nothing was available in 1990 for me in South Carolina. Once I relocated to New York I really began to take charge of getting into services. Going to the doctor every three months, taking my medication daily etc. At this point in my healthcare journey I research the best doctors that I believe will work for me. A primary care physician (PCP) that not only treats you for HIV, but for other health concerns is extremely important to me. Having a PCP that was on point with my entire health other than HIV means a lot. From my experience with her she has set the bar when I am researching my next provider, because I am looking. The way I stay informed on HIV is attending trainings at places like Department of Health and Mental Hygiene. Cicatelli Associates, ACRIA and webinars and conference calls. Information is always changing concerning HIV. The information I received now is not the same as back in 2000.
My attitude and knowledge toward healthcare in New York State has changed in a very positive way since becoming HIV positive. After being HIV positive for some 25 odd years, I have come to believe that New York State may offer the best healthcare for positive individuals. Many of my positive friends have moved out of state only to return to New York State because of the healthcare it provides. I stay informed by reading materials, e.g. periodicals, medical journals, and communiques. Also I regularly attend and participate in local, national, and international venues specifically for the purpose of either raising awareness regarding HIV, and or discussing political and scientific issues related to HIV.
My attitude and my knowledge toward healthcare in New York State has not changed as much as it has evolved. I was not diagnosed with HIV in New York, I received my diagnosis in Maryland in the late 80’s. I was still in denial and not in treatment when I moved to Boston in the late 90’s, so that is where my HIV education began. Upon seeing an ID doctor in Boston, I was immediately connected with a HIV case manager who in turn connected me to additional services such as medication delivery, peer groups, the HIV wellness center and Tufts dental school. This experience changed my attitude about my HIV diagnosis, I started to think about living with HIV as opposed to dying with HIV. The more I learned about HIV, the more adept I became at managing my healthcare. When I moved back to Albany (my home town) in 2009, I was pleased to learn that New York State offered comprehensive, patient centered healthcare services that included the AIDS Drug Assistance Program (ADAP) which relieved my worries about continuing my medications and made my transition from Boston to Albany very easy. What do I do currently to stay informed? I currently work as a Peer Counselor at an urban community healthcare center and have access to the most up to date chronic illness information through my co workers, clinicians, providers and clients. I am also linked into local community organizations that facilitate forums to promote health literacy and HIV/HCV education to improve overall health outcomes for those that need it most.
I was already positive when I moved to New York State, so it was all a learning curve with how healthcare worked here. My navigation was fairly okay with moving from D.C. to New York. I was already with a pharmacy and in care with an organization that had an office in Brooklyn, so I transferred up here and all my labs transferred up here as well. It did take a few weeks to get insurance and coverage straightened out but once it all was cleared things went very smoothly. The blessing was that I had prior knowledge from working in the field of how to transfer my services, but I was concerned about those who may not know how. It is important that people do research when transferring to a new state, or beginning HIV care treatment because you will have to begin seeing a specialist, and need a general practitioner for other health concerns.
To stay informed, I always google HIV news. There is always some new advancement or writings about what is going on with HIV both domestically and globally and it is good to be knowledgeable about potential new options and treatments available. I also ask my doctor lots of questions. Never being afraid to ask a question is so important, especially when it comes to one’s own health.
I have always worked with advocacy groups in the past that have dealt with the issues of the healthcare system. It has always had its ups and downs as far as I am concerned. However, I also know that since becoming positive I have witnessed not only the healthcare system continue to play a role in the disparities, but refuse to acknowledge them. Our healthcare system is a problem that our leaders refuse to address and as a result of this, we have consumers who continue to fall victim. Medicaid is a major issue for many people to access and keep active. Due to this many people do not receive treatment. Also there tends to be a whole lot of stigma attached to the healthcare system in many concentrated communities of poverty. Primarily we find this amongst the African Americans and Latin Americans. Due to this stigma people do not go to the doctor’s office for issues that might have been prevented if they had health insurance and were not scared away. Which is why we have so much of an increase in Emergency Department visits. We need to understand the cultural differences between the two and find ways to bridge the gap. We need to educate our front lines all the way to senior and executive staff. This is why I serve and advocate on behalf of my community. I attend councils and am active on two consumer advisory boards. To keep this issue at the forefront of this long war but I do believe each and everyday a battle is won. So I encourage all to be a HARDCORE TREATMENT ADVOCATE and keep on reaching beyond the walls and barriers.
Well, in the 25 years since I have tested HIV positive, I have taken healthcare much more seriously.I stay informed by actually doing this work and teaching others about healthcare and their rights. Also I co-chair the New York State AI Office of the Medical Director Quality of Care Consumer Advisory Committee, where we advocate, and create best practices for, HIV positive people in New York State.
I continue to get trained on topics related to HIV and medical updates and keep my finger on the pulse, so I can keep others well informed.
My knowledge and attitude about healthcare in New York State has changed in many ways over the years. In 1984 my father died in Mt. Sinai hospital and he had AIDS when he died. At that time all I or anyone knew was that people died from this disease. Ten years later I was diagnosed and I was certain that I would die also. Today it is a different story. New York State has definitely evolved in healthcare over the years as the medical community has evolved. New York State has been a leader in HIV care and treatment for people that are HIV positive. We have made it possible for people to be tested and if need be to get on treatment immediately. We continue to work on removing any barriers to care in order for it to be more accessible for those in need. Although there are still communities within New York State that are not being reached, New York State is using programs like this campaign to reach those communities. We have not just Medicaid but also AIDS Drug Assistance Program (ADAP) that assists people to pay for healthcare and medications. I am proud to say that I am a New York State resident and that I do not have to worry about medications or not having a medical provider that will care for me. I know that I will not die from this disease and that I can lead a normal life just like someone who is not HIV positive.
When I was diagnosed as having HIV in the mid-80s, I had no knowledge of what and how healthcare worked in my state. All I knew was that so many people were getting sick and dying from this disease called AIDS. There was a very small amount of funds available for research at that time, and the cost of medication to help fight the disease was so expensive that only rich people could afford it. Here in 2018 there is research going on across the state and worldwide to find a cure, and help stop the AIDS epidemic. Along with this research the healthcare system has stepped up to the plate and taken some action in helping ease the cost of HIV medication to those who are in need of it. Here are some of the ways that I stay informed in my community: speaking with my healthcare provider about what new information has come out since the previous year, networking with healthcare providers on the internet with updated information, I am on the AIDS awareness mailing list, and I go to HIVStopsWithMe.Org and find plenty of information there. I am proud to be a hardcore treatment advocate, for the HIV stops with me campaign.