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! 

Advertisements

A trip through Cyberspace- Andrew Friedman

Andrew Friedman- Emerson College

The Boston Living Center takes living very seriously. It could be a member lunch, painting class, yoga, or a massage, theBostonLivingCenterworks to make sure that you know how to live your life. Every day this center enables its’ members and allows them to reach their full potential: giving them skills, a sense of community, resources and most importantly hope. A hope that reminds the members of this center that living with HIV/AIDS is not the death sentence that it used to be; that people can live their lives to the fullest regardless of their status and their socioeconomic level. That is what the Boston Living Center does. It gives people a chance to live.

From the moment I walked into the doors of theBoston Living Center I was greeted with respect and kindness. It didn’t matter to anyone if I was a member or a volunteer but only that I was there to make a difference. I was to only stay five weeks, as part of a service learning project at Emerson College, but I quickly found that a place like this you could volunteer for a lifetime.

I was set up in the computer lab, where I was to help members in need of basic Microsoft Office skills or just any problems on the computer. I was nervous, quiet, and wondered if I was going to be receptive in my mission to help the members of this community. Would they merely view me as another volunteer just doing this because I was assigned?  Would they not take me seriously because I didn’t have HIV?  These questions pounded through my brain as I wandered down the hall on my way to towards Cyberspace. In about three seconds of being in that room, those thoughts were out of my head. Everyone wanted to talk, everyone wanted some help and everybody was nicer than I could ever believe. It didn’t even matter to people that I didn’t have HIV.  In fact I forgot I was even in a place that helped people with HIV!

 As I write this on my final day of the project I am filled with a sense of connection that I had never anticipated. Since day one I have been accepted into the Cyberspace community and it is a community that I will dearly miss. The laughter of people watching YouTube, the constant writing and re-writing from people working on letters and papers and the warm handshake and great conversation of Stuart, the overseer of the whole operation.

The Boston Living Center has enthralled me, challenged me, taught me and most of all inspired me. It reminded me how important it was to take full advantage of the simple fact that we are here breathing on this Earth together. That regardless of HIV status or socioeconomic class we all are connected and reliant on one another and it is our mission to help each other. That is the most important lesson of all and it is something I will remember for the rest of my life.

Thank you,  Andrew Friedman Emerson College

Housing Hope

By Ariel Jastromb

At the BLC 40% of our members are homeless or precariously housed. It is crucial then to connect BLC members with housing resources. The BLC will help members apply for specialized HIV public housing. We will also work with a member to maintain housing, with rental start-up, accessing furniture, utility assistance and homeless prevention support. These services are integral to the BLC’s holistic approach to helping members live healthier lives.

Home is where the health is for homeless people living with HIV/AIDS. HIV in the United States is increasingly becoming a disease of the poor, especially in urban communities where homelessness is more present. Individuals from all socioeconomic backgrounds are being faced with homelessness—especially in a dwindling economy.

“Homeless” does not only describe those living on the street. While street people are indeed homeless, there are plenty of full-time workers and seemingly “together” people that have no place to call their own. For someone living with HIV/AIDS, being homeless can complicate managing medications, nutrition and mental health.

People who are homeless are less likely to have information about HIV and how to prevent and treat the disease. This stems from several factors, including poor and infrequent medical care and prejudiced healthcare providers. Many  people who suffer from homelessness do not often learn of their HIV status until the disease is extremely advanced, if at all. When the status is revealed, it can be difficult to pursue a course of effective treatment without a permanent address.

Medication affordability and adherence is an issue that all HIV/AIDS patients face. However, for the homeless individual, a glass of water or a meal with which to take certain medications cannot always be guaranteed. HIV medications come with many side effects that can be made somewhat easier by incorporating dietary changes or having access to cool towels to relieve a headache, saltines to relieve nausea, or restrooms in the case of medication-related diarrhea. Without regular access to these resources, adherence to a medication regimen is less likely to happen. A healthcare provider could suggest different medications for the person if, say, three meals a day could not be had but the lack of healthcare affords the homeless none of the information and constant monitoring that any HIV/AIDS patient needs.

Another factor that complicates the treatment of HIV/AIDS in the homeless individual is the lack of attention paid to why the individual is homeless. Treatment issues like substance abuse, domestic violence and shelter conditions keep people on the street and out of the “know.”

Acquisition of proper housing is perhaps the most crucial step when it comes to those living with HIV/AIDS. Treating the disease requires much effort and commitment from the individual. Without a place to store, track and take pills, or to administer the self-care involved, along with finding a healthcare provider and dealing with the issues encountered by the homeless, living with HIV/AIDS becomes increasingly difficult. For a long and healthy life it is important to secure housing for all people living with HIV/AIDS—a life can depend on it.