Guest Blogger Rob Quinn: Our Voice Matters!

By Rob Quinn

On April 13 and 14, nearly 400 HIV/AIDS advocates from 30 states, Puerto Rico, and Washington, traveled to Washington, D.C. to AIDSWatch 2015, the nation’s largest annual constituent-based national HIV/AIDS advocacy event.

It was so inspiring to be among these members of our community, including my fellow members of Massachusetts Delegation, to share our journeys of living positive with over 200 Members of Congress to educate them about the important issues at stake for people living with HIV/AIDS in the United States. My twenty-one year journey as a person living and thriving with HIV/AIDS has evolved from being an unheard voice to a voice for the unheard. This year’s ask included: Protect, Fund, and Support Implementation of the Affordable Care Act (ACA); Ensure Ongoing Investment in the Ryan White Program; Modernize the Housing Opportunities for People with AIDS (HOPW) Program; Remove the Ban on the Use of Federal Funds in Support of Syringe Exchange; Support Adolescent Sexual Health Promotion Programs and Eliminate Federal Abstinence-Only-Until-Marriage Programs; Support the REPEAL HIV Discrimination Act; and, Ensure Funding of a Comprehensive Federal Response to HIV and AIDS.

This experience was a strong reminder of how grateful I am to be living and thriving with HIV/AIDS in Massachusetts. As a member of the Massachusetts AIDSWatch Delegation the past two years, I have come to relearn that Massachusetts, in my opinion, is the platinum standard for HIV care in the United States, which includes HIV prevention, testing, treatment, medical case management, and other health and social services.

My health and happiness are my greatest assets and highest priorities. The foundation on which I continue to build these is through Massachusetts’ affordable housing.  Housing is healthcare; it is fundamental to our overall health and well-being and improves quality of life. Next on my priority list is access to healthcare, which includes world-class academic medical centers that offer outstanding patient care, as well as expert providers that understand the most advanced developments and break new ground with ongoing, innovative research. Continuing on is access to approved lifesaving drug treatments. This in large part made possible through the Massachusetts HIV Drug Assistance Program (HDAP), designed to help those of us who cannot afford to pay the full cost of the lifesaving HIV-related drugs we need. HDAP helps pay for my medications and Medicare Part D health insurance through the Comprehensive Health Insurance Initiative (CHII) program.

Essential to anyone’s overall health, regardless of HIV status, is oral health. I, like many others, am underinsured and do not have dental insurance. Those of living with HIV are at special risk for oral health problems. Many of these problems arise because our immune system is weakened and less able to fight off infection. Massachusetts to the rescue again!  The HIV Dental Ombudsperson Program (HIV DOP) is a comprehensive dental access program for persons with HIV/AIDS in Massachusetts, funded under Ryan White Part A and with funds from the Massachusetts Department of Public Health.

Lastly, having recently relocated to Boston and as an aging HIV-er, one of my primary concerns is accessing medical case management and other health and social services for people living with HIV/AIDS. Thankfully, there is strong sense of community and belonging that Massachusetts, Boston in particular, offers.

AIDSWatch 2015 may be over, but our advocacy for increased awareness, decreased stigma, and the work towards an AIDS-free generation must continue. Let’s keep the momentum and conversations going. Advocate on behalf of yourself and our community. You can use the power of your voice and journey to make a difference right here at home, in the Greater Boston area. To find out whom your state Representative and State Senator are, type in your address at http://www.wheredoivotema.com/bal/myelectioninfo.aspx. To get the contact information for your State Senator and State Representative, go to https://malegislature.gov/People/Search.

You can also get involved locally with Project ABLE (AIDS Budget Legislative Effort) a statewide coalition of AIDS service providers, advocates and people with HIV/AIDS. Since the early 1990’s, Project ABLE has successfully increased state funding for HIV/AIDS by working effectively with several governors and their respective administrations, the Massachusetts legislature, and through mobilizing a grassroots network of HIV/AIDS service providers, advocates, and people with HIV/AIDS. Much thanks to Project ABLE’s efforts, just last week the Massachusetts Senate Ways and Means budget proposal for Fiscal Year 2016 added  approximately $800,000 to the HIV/AIDS/HCV Line Item (4512-0103) over this year’s funding and over the final House budget for Fiscal Year 2016. The Senate funded the line item at $33 million. This is over a $3+ million increase over the Governor’s budget for the line item, which he funded at $29.9 million. This is the largest increase in funding for HIV/AIDS/HCV in several years, and it is great news. Please contact your state senator to thank him/her for supporting funding at $33 million for the HIV/AIDS/HCV Line Item (4512-0103) in the Senate budget.

Whether or not you are directly impacted, we are all affected by HIV/AIDS. We are advocates united: issues over egos; solutions over personal gains.

Link for AIDSWatch 2015

http://www.aidsunited.org/Policy-0024-Advocacy/AIDSWatch-2015.aspx.

Link for Project ABLE

http://projectablema.org/

Tune in every 4th Friday to read more from Rob! 

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Interview the JoAnne: Member of the BLC for 20 years!

By Boston University Intern Nick Emard

After a long awaited interview, I sat down with BLC member JoAnne C to discuss stigma and the importance of education in HIV communities. The following dialogue is from my conversation with JoAnne.

How long have you been a member of the BLC?

“Well my official badge says 1999, but I’m pretty sure that I’ve been here since 1995. It’s been a long time.”

How has the BLC changed since you have been a member?

“I know way back when I came here it was just like all gay men. I mean they had female staff members and they tried to promote things, but I don’t think at that time a lot women were actually utilizing the services.

“I know that when I came back here and joined the CAB, we tried to get things going for women. So it’s had it ups and downs.

“But, I love when I see new women here. I love when I take Healthy Relationships and there’s a woman in there for the first time trying to navigate through this, and it’s like, ‘You have all the help right here.’ You know?”

In what ways has HIV affected your life?

“Well, I say all the time that HIV saved my life. The resources that I’ve received- I mean it’s kept me housed, it kept me in health care, it even helped [get me] into recovery. I just knew what to do because I landed in an HIV positive program, or a program for HIV positive clients, and they told me, “go to the Boston Living Center, go to AIDS Action, ask questions.”

Have you ever experienced HIV-related stigma?

“I don’t give stigma much thought, I really don’t. I mean the stigma is definitely there because the basic citizen of the United States has no – until they’re affected by HIV- they’re not really educated on it. And, people really have no concept of it.

“You really have to embrace this [diagnosis]. It’s just a piece of me – like my eyes are brown, okay my eyes are brown – I can’t change that. I can’t change the fact that I have HIV so I have to find a way to live with it. “

Do you think that there’s stigma within the BLC community?

“I don’t think it’s within the BLC as far as status is concerned… It’s just like another family, you know? We become a family, and we don’t even know it, and as far as stigma within the BLC? I don’t think so.”

I would like to thank JoAnne for sitting down and taking the time to tell me her story. As a longtime member of the BLC, she has a lot of insight to offer and she gives a positive spin to any situation that she comes across. It was a pleasure interviewing her and discussing her perspectives.

Being Positive is About More Than Just a Diagnosis

By Caitlin O’Gallagher, Prevention and Education Specialist at the Boston Living Center

The doors of the Boston Living Center swing open every day to welcome the individuals who make up the core of this organization. Artists, teachers, activists, cooks, mothers, poets, fathers, students, professionals – they all walk through our doors. Each of these people comes in with a different conversation to be had – let me tell you about the bike ride I just took, or did you see that article in the Metro this morning? At the end of the day, what they each have in common is that they are HIV positive. But it’s what’s beyond that diagnosis and label that makes each of these people uniquely different and imperative to the colorful tapestry that is the BLC community.

In many causal conversations out in the world about the HIV positive community, we hear language that insinuates that once a person becomes HIV positive, that diagnosis becomes their identity. They not only have HIV, but they are now defined by their HIV. But in many conversations within the HIV positive community, we hear that whereas the diagnosis may become a part of the person’s identity, it by no means becomes all that that person is. One of our members here often says that he has HIV, but HIV does not have him. That saying sums it up perfectly; yes, HIV is a part of him, but it’s not all of him.

Members here sometimes tell me that they are sick of talking about HIV. We hear it all the time, they say, we’re bombarded with conversations about it every day between all of the different services we receive. Why does this constant conversation about HIV get on their nerves? Because they are still people – people with hobbies and interests, people with senses of humor, and people who often have more pressing, immediate issues to tackle than an HIV diagnosis. Sometimes they just want to be able to talk about other issues and parts of them that aren’t their HIV. And shouldn’t that be okay?

So let’s look beyond the diagnosis. Yes, it’s still absolutely necessary to be talking about HIV, to be educating people about HIV, and to be having honest conversations with people about HIV. This is how we confront and combat stigma. But it’s also important to talk to these same people about the other parts of their lives. This is also how we combat stigma. And how’s the new apartment coming along? How did that interview go the other day? How’s your new pottery project coming along? When we address people as people, and not a diagnosis, we combat the notion that people are their HIV.

Here at the BLC, we strive to do just that. We infuse education, support, and learning opportunities into our interactions on a daily basis, but we also remember to check in with people about the million other important or seemingly mundane things going on in their lives. This is where true support lies. I will talk to you about your viral load, your medication side effects, and your CD4 count, but I’ll also talk to you about your family, your cat, or what you cooked for dinner last night. To form a community that is sustainable and has real impact on its members, conversations and support must be all-encompassing.

Let’s move beyond pigeon holing people and move into a space where we can instead be comfortable allowing people to decide for themselves what their most important parts are. I invite you to think about how to see individuals beyond their diagnoses and how to engage and interact with the whole person, not just one part.