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Reframing Stigma To Create Change

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          I have been spending time on Grindr, Scruff, Adam4Adam, and similar sites in order to make some new friends. Why these sites you ask?  Because these sites can be used for more than hooking up.  I have met some amazing people on these sites that had absolutely nothing to do with sex.  It is our own social constructions and preconceived ideas that perpetuate the stigma associated with using such sites. 

          It was not until a recent event that should give all of us pause.  I am referring to the forced outing of my HIV status by another person.  These types of events are happening with greater frequency according to some local HIV case manager(s).  The LGBT community, at least in Allentown, Pa, seem to be moving away from simple stigma to bullying, intimidation, and punishment of people living with HIV.  Meanwhile, my local LGBT organizations continue to be silent on the issue allow it to continue despite pleading for some type of intrinsically motivated advocacy.  In my opinion, LGBT organizations are complicit in the bullying of people with HIV because remaining silent about HIV stigma is worse than committing it.

          On September 15th, I was using Grindr when I noticed an odd profile.  The person's profile photo was a screen shot of HIV Statistics and the person's prdisclosure.jpgofile seemed aggressive and hostile indicating they did not want to meet anyone.  I curiously asked why they maintained a profile on Grindr if they did not want to meet anyone?  It became horrifyingly clear that this person was creating stigma.  This person was using HIV statistics to justify shunning certain people who are living with HIV because of what I perceived as this person's belief that people with HIV hide their status in order to harm others. I tried to educate this person and eventually became frustrated because it was clear my words were not being heard.
(Source: User "Verse" Grindr, 9/15/2014)                            (Source: User "Verse" Grindr, 9/15/2014)
assumptions.pngthreats.jpg







          As a direct result of my attempts to educate and advocate for others living with HIV, this person assumed I was HIV positive.  I was completely unprepared for what happened next when this person decided to out my HIV status simply for advocating on the behalf of people (and my) living with HIV.  While I am very open about my own HIV status on POZ Magazine and in the profiles I have created on sites like Grindr, I was still shaken that this person would engage in such intimidating behavior because of ignorance and false information.  Naturally, I myself became angry and for good reason.  The more I defended people with HIV and providing real facts about stigma and how HIV is spread the more aggressive this person became and determined to out my already public status.  The conversation ended with the following photo being used as this person's profile photo.  This person used an app on their phone to take a screen shot of my photo, edit it, and then upload it as their own profile photo.
                                        (Source: User "Verse" Grindr, 9/15/2014)
verseoriginal.jpg
          I could have allowed this incident to cause me to become depressed and afraid, which I did, but I chose to re-frame this stigmatizing event into something positive to help combat HIV stigma and the ignorance surrounding it.  I turned this person's intimidating actions into an HIV public service announcement about HIV stigma.  I edited this person's photo to include the following and used it as my facebook profile photo.
                                       (Source: Daniel Angelis, facebook, 2014)
stigmaPSA.jpg          Why was I ultimately unafraid of this person?  I was not afraid because this person never disclosed their name or photo.  I was victimized and bullied by someone who hid behind a computer screen but was afraid to discuss their convictions in the light of day.  It is time we bring HIV stigma out from behind computer screens and closed conversations.  It is time to end HIV stigma, bullying, and intimidation once and for all.  All I can say to this person is, I wish that you were more educated about HIV because ignorance is putting you ("Verse") at increased risk of contracting the virus because HIV is primarily transmitted by people who do not know their status because they have not been tested. 

          The fear that you ("Verse") are creating cause people to be afraid to be tested for HIV. Therefore, if a person does not know they have the virus because of this and are transmitting the virus because they are not being treated with medications that prevent transmission to begin with.  The next time someone stigmatizes you, remember that you have the power to stop them.
               I lost another job to HIV related discrimination at Community Services for Children, Inc., as it turns out, they do not want HIV positive employees to work with children. Fortunately, I landed a job with a small medical practice that took cash only, but they were not doing well and could not keep me. They said I had done so well they did not want me to leave but had no choice and said that they would give me a great reference.  That's great, but because of ongoing discrimination I have run out of unemployment insurance......and income. Therefore, I had to rely on social service programs like SNAP, Rental Assistance, and ADAP...etc. It was at this time that I discovered that the paperwork and re-certification process required to obtain and keep the ADAP benefit was so egregious it was causing people to go without medication.  This was the impetus for starting the Six Petition (Please sign it).  However, I also realized that this terrible application process is also the same process used by the Department of Public Welfare and Unemployment offices.

               We all know that the Affordable Care Act would impact HIV care on some level.  It would seem this integration of HIV care into the broader social system is having a negative impact on overall care and outcomes. Indeed, new HIV infections in 15-24 year olds have more than doubled in my State of Pennsylvania. I am not arguing that we should not streamline our social services into a single comprehensive program that helps everyone equally, however, I am saying that the programs must take into account the unique issues that impact people living with illnesses like HIV that require ongoing and life sustaining medications. From my experience, I learned that the overall social welfare system is setup in such a way that it prohibits people from applying. Even when a person like myself had no income, everything about my life was questioned, monitored, and judged.  Furthermore, I have also learned from friends who work in social services that AIDS Service Organizations are disappearing in favor of a medical model.  However, as I can attest to from my own experiences in my own community, this model is having a negative impact on people living with HIV.  Is it time to return to the protest tactics of the 80's?

               Finally, the reason the Six Petition is important is because diseases like HIV require so many resources in order to remain adherent to prescribed medication regimens. HIV, like some other diseases, requires ongoing medical treatment that cannot be interrupted because treatment is life sustaining and is necessary in order to have the best possible medical outcome.  Signing the petition highlights just how important access to food and shelter is in adherence and also how egregious the programs have become. 
The Six Petition can be signed here.
 
             Last night before I went to bed I was feeling discouraged because I thought there was nothing we could do to alleviate the problems we are facing nationwide regarding the administration of the Ryan White Part B program, which pays for medications people living with HIV need in order to stop the virus from progressing to AIDS and stop transmission. Then, as I gazed into the screen on my phone in its docking bay I saw an email from change.org appear on its screen. This email was soon followed by another email from the CDC acknowledging the email I sent them regarding the petition. This gave me hope that we can make a difference (again) in the lives of people living with HIV.

               Having said that, I want to ask everyone at POZ and bloggers and any and every friend or family member of and person living with HIV to please lend your support and sign this petition. We can do this! Anyone living with HIV deserves a chance at living a full and healthy life. The petition has been updated (Thank you Amanda Kloer at change.org for your help). The link to the petition is located at the bottom of this post-if you are in a hurry.

Department of Health and Human Services: Stop disrupting HIV patients' access to medication

 

I am living with HIV, and because of a minor clerical error, I almost lost access to my medication, putting me at risk of getting sick and spreading HIV to others. This happens to thousands of Americans. We must get the Department of Health and Human Services to act to correct this bureaucratic nightmare.

 

My application for the AIDS Drug Assistance Program (ADAP), the primary drug assistance program for people living with HIV, was rejected because my employer forgot to date and sign a letter. Fortunately, with the help of the AIDS Law Project of Philadelphia, I was able to refill my prescriptions.

 

But thousands of other people living with HIV aren't as fortunate -- they are often going 7-10 days without medication because the application process has become so difficult and time consuming. That means they're being put at risk of getting sick and spreading HIV to others.

 

Here's the problem: People must re-certify their ADAP benefits every 6 months, including providing their CD4 and Viral Load counts. Some states also add additional restrictions. Many people, like me, are forced to involve their employers to get re-certified, putting them at risk for discrimination. The application process is so long and arduous, thousands run out of medication while waiting for approval.

 

Continuous HIV medication is important for both the individual taking the medication and public health. First, medications used to treat HIV keep patients healthy and prevent HIV from developing into AIDS. Second, these medications suppress the virus to undetectable levels that drastically reduce or eliminate the transmission of the virus. However, even a short break in taking these medications can increase the viral load rises and the likelihood of transmission. Furthermore, when HIV medications are taken intermittently the virus can become immune to the effects of that specific drug "cocktail" rendering it ineffective forcing the patient to move on to another medication. If this cycle continues, the patient will eventually run out of options to suppress the virus and remain healthy.

 

The Department of Health and Human Services must ensure that patients are able to get continuous HIV medication, keep their risk of spreading the virus low, and stay healthy. They can make the process easier -- the ADAP application used to consist of a single page, and now it consists of 8 pages.

Please join me in asking them to remove unnecessary hurdles to obtaining access to the ADAP program, including:

1. End the requirement to get re-certified every six months in order to keep taking medication

2. Make the CD4 and viral load reporting voluntary, to cut way down on paperwork

3. Create a single page application for ADAP benefits to simplify the process for patients

4. Stop rejecting applications due to small clerical errors

 

Thank you for joining me in making sure that bureaucracy and clerical errors are never a reason people can't get the medication they need.


The Six Petition can be signed here.

End the 6: Sign the ADAP Petition

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               When I started this petition I did not realize how complex HIV/AIDS programs are. I soon realized that, yes, there are many people who are involved in creating social programs like the Ryan White program. This has caused me some anxiety because I really do not know who to direct the petition to. This is because there are simply so many people involved at different levels. So, I decided to direct the petition to HRSA (Health Resources and Services Administration). Am I new to learning the details of this complex program, absolutely. Am I going to make mistakes, hell yes. Will I piss some people off? Already have. Do I at least have to try? Definitely.  Also, last night I spent hours researching and contacting any and every HIV/AIDS organization I could find from local service organizations in California to national non-profits like amfAR. If you are living with HIV or are someone who supports people living with HIV, please sign this petition, it can only help improve access to medication and health care.

Update to the petition: You can sign the petition by going here.

HIV medication is important for both the individual taking the medication and public health. First, medications used to treat HIV keep patients healthy and in the land of the living. Second, these medications suppress the virus to undetectable levels that drastically reduce or eliminate the transmission of the virus. According to the Pennsylvania Department of Health/Welfare's own reports there is at least a 6 day gap where people living with HIV are going without medications because the application process has become so difficult an applicant is rejected multiple times resulting in that person losing access to the medication itself. It is a known fact that interruptions in taking HIV medications increases HIV resistance to the medications.

What we need to do at all levels of the application process:

1. End the six month re-certification process

2. Make the CD4 Reporting Voluntary

3. Create a single page application for ADAP benefits

4. Remove unnecessary hurdles to obtaining access to the adap program. (e.g. A pay stub or declaration of no-income should be the only requirement to determine financial elligibility, rejecting an application because a document was not signed or dated.).



End the SIX

| 2 Comments
Regarding the blog I created the other day expressing my anger and frustration over the state of HIV care in the Lehigh Valley and Pennsylvania in general, I decided to take action because I cannot allow what is happening to continue. I have created a petition on Change.org to demand that SPBP and the Pennsylvania Department of Health to stop making the application process for HIV medications so difficult that people are going without medications for at least 6 days.

Why is this important?


  • Medication suppresses the HIV virus to undetectable levels which drastically reduces or eliminates HIV transmission (Google HIV Partner Study)
  • If people take medications intermittently, the virus can become immune to the effects to the drug, causing resistance leading to reduced options for treating the disease for everyone
  •  By the Pennsylvania Department of Health allowing these two things to occur, the transmission rate of drug resistant HIV increases

Please sign the petition, you will be helping everyone in our community, the petition can be found here: http://chn.ge/1jLhco5


Where have all the cowboys gone?-A general rant.

| 1 Comment
               I need to rant about my frustration with HIV care (or lack of) in our community. I realized something after meeting with an old friend who was the former president of F.A.C.T (Fighting AIDS Continuously Together). This organization is one of the most beloved in our community and who I think genuinely care about the HIV positive GLBT members of our community. However, this organization may be disappearing due to financial issues. Also, I think all of the organizations care and are just caught in the middle, between people living with HIV and our dysfunctional and broken government. Furthermore, there are rumors that Pennsylvania's AIDS Service Organizations may be disappearing as well because there are fewer and fewer programs and assistance available to people who need it. Not only are there fewer programs, but the programs that are left require greater and greater hurdles to jump through and even greater threats to personal freedom in exchange for this help in the form of fines or imprisonment to the point where you are locked into a cycle of poverty. However, this is just rumor. One thing is for certain, many changes will be occurring as a result of ACA. Whatever those changes, I hope that Pennsylvania ASO's will remain because they ensure that clinics provide high quality care to all people living with HIV and advocate on our behalf. And, considering the ongoing problems at the Pennsylvania Department of Health and Pennsylvania Department of Welfare, we need advocates more than ever.

               Hypothetically, what will happen if F.A.C.T and ASO's disappear? Organizations like Pride GLV, Pennsylvania Diversity Network, and Equality PA will finally be forced to advocate on their own behalf.  I am also noticing negative changes in the case management I receive. I frequently hear fatalist comments made by case managers. I have heard case managers at LVHN tell their clients "it was not meant to be" or "it was not God's plan" when something does not work out. These comments increase apathy in patients and the organizations that provide them because these statements are telling clients that they should simply accept what is happening to them. When I challenged a case manager at LVHN that the processes in place to HIV care are barriers they said they were not, when they really are. These types of comments also excuse the behaviors of others that caused the problem to begin with and perpetuate an increasingly broken system. Furthermore, there seems to be a mentality of giving clients a hand out instead of helping individuals to become independent and self sufficient. A good example of an organization that helps clients become self sufficient is Philadelphia Fight.

             I served on the F.A.C.T and Pride GLV board of directors.  However, there was clear resistance to change at F.A.C.T and resistance to advocacy at PRIDE GLV so I resigned because I was fighting an uphill battle against apathy. Furthermore, Pennsylvania Diversity Network does not really care about GLBT members living with HIV. Advocacy within any organization is directly proportionate to the amount of HIV related information provided by the organization. Pride GLV took down their HIV testing app and removed references to HIV from their site and Pennsylvania Diversity Network has a listing of where one can locate HIV services, but it is outdated. This lack of support comes at a time when the GLBT community are still disproportionately impacted by HIV.

              There are organizations like St. Luke's University Hospital who discriminate against people with HIV and have done so on more than one occasion involving different people. Furthermore, it is well known that St. Luke's University Hospital discriminates against everyone in the GLBT community. If an organization like this discriminates against the very people it is supposed to help, how can it provide any type of care to us?

               Despite the non-existent advocacy occurring in our community that is causing the extrusion of HIV positive GLBT members from the Lehigh Valley, growing acceptance of the GLBT community will have a positive impact on overall health within the GLBT community. However, this does not excuse the lack of acceptance by those who are HIV negative. I need to express my anger and frustration over what I view as an increasingly complex system that is ultimately failing the people it is supposed to serve. Indeed, I found out that as a result of SPBP's difficult application process the average window a patient goes without taking prescribed HIV medications is 6 days (according to their own reports). Why the hell are we not doing something about this?

               I want to make positive changes in our community for people living with HIV, but I need help and resources in order to do it.....and with little support from our community it is difficult. Also, how can I hope to receive quality care from anyone in Lehigh Valley PA if my only choices are between two highly competitive organizations, where one discriminates against people with HIV or who are gay and the other is apathetic? There is definitely something wrong at all levels of the social support system from the hospital level through the federal level.


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