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"I Came to GMHC to Help People"

Alexandra RemmelBy Alexandra Remmel

I officially started at GMHC 18 years ago in the blizzard of 1996. The job was part of a life change. After 15 years of me volunteering one night a week at the New York Presbyterian Hospital Emergency Room at the beginning of the AIDS epidemic, my husband asked if I wanted to change careers.  Then  I could incorporate what I so obviously enjoyed into the next phase of my career. He was correct. I went back to school and obtained my Masters degree in Health Care Advocacy from Sarah Lawrence College. After an internship in the Health Care Advocacy Unit at GMHC, I was hooked. Health Care Advocacy helped people receive access to care and insurance. While there has been a lot of change I am still with a fabulous Advocacy Unit, helping people navigate their health care options and access benefits. Someone asked how I handle the stress. It is simple - The clients and the staff have taught me so much over the years and given me back way more than I have provided. 

 
In 1996, HIV/AIDS was still an uncontrolled monster. Procedures were not finalized so we, the advocates, could lobby the insurance companies and the doctors to have treatments funded.  One client in 1996 had CMV retinitis, a potentially blinding eye condition. He needed a special process to be done, an implant in his eye, and it was not fully funded by his insurance.  The process was still under review. A tentative code had been assigned by Medicaid, but the insurance company did not want to pay for it.  I wrote letters and made calls, working closely with the doctor who wanted the client to have the needed implant covered.  We succeeded. That client and I are still working together on other issues.
 
Also in that year, another client came in who barely had the strength to stand. Reuben in Intake called me so we could help ensure his care was paid for. He needed to be on COBRA from his job to continue to see his doctor and stay in treatment. His energy level was non-existent so we needed to be very hands on. While he had insurance, there were problems having his COBRA paid for, and his access to care maintained. He had lost his job and had no expectation of getting another one. During his medical care, which was successful, he rethought what he wanted to do so he could be active yet not jeopardize his health. He started volunteering in a different field and has found a completely different life.
 
Not all the clients I have worked with have survived, but those that have gone on are still with me, albeit more quietly. 
 
In recent years, we have had a number of clients who work and then lost their jobs either due to the economy or due to their health. A number have thought they could not continue their insurance because they could not afford it and came to see me and my team about alternatives. Not everyone has known about ADAP, (AIDS Drug Assistance Program), which will pay for private insurance. It is a flexible program that has been an integral part of accessing health care here in New York. Regardless of a client’s previous salary, if they are on unemployment, they meet ADAP’s financial criteria. We help them assess the rest of the eligibility criteria, but more often than not I am able to give good news to someone who has just received a harsh blow.  ADAP is also good for a newly diagnosed person while working out next steps. Their sensitivity towards the clients has been a very useful thing in a time of concern.  
 
The people we work with are learning how to survive and cope with their diagnosis while the systems around them are changing. I have had to learn as well. Medicare Part D began on January 1,2006. Medicaid Managed Care was rolled out over 10 years and now the Affordable Care Act is underway. We have learned along with our clients and created networks at other agencies, as we all try to provide services. Some of clients and I reminisce over Medicare Part D or compare it to the new changes. Again that kind of perspective provides both me and the client support. Usually we never thought that we could laugh over a difficult issue while we were experiencing it. 
 
Now I spend a lot of time counseling people on how they can return to work without risking their benefits or causing an overpayment which is quite a development after 18 years.  Full-time work may not be an option for everyone but the possibility of more education can be, which I find very rewarding. 
 
Working here in the Advocacy Unit at GMHC has been a wonderful experience with many highs and lows. I have grown in the process, utilized unexpected skills, and further honed my “nagging wife and elder sister” qualities. The hardest thing I have had to learn is that I cannot make someone do something. I can inform and make sure that the client is aware of the options, but the choice of the next step is not mine.
 
Lastly, I became a member of GMHC’s Consumer Advisory Board (CAB) at their invitation which has been a major compliment that I appreciate.  This group advocates for the clients’ concerns which are shared at the monthly meeting. The CAB also educates clients about upcoming changes internally and externally. The monthly meeting is an open arena to discuss issues that I as a member can participate in or learn from which allows me to grow.
 
"I Hear Stories that Make My Heart Ache"

Jason CianciottoBy Jason Cianciotto, Director of Public Policy, GMHC

What could our movement to end the HIV epidemic accomplish with $24 billion?

According to an estimate from the financial services company, Standard and Poors (S&P), that is what the government shutdown cost the U.S. economy. The same political leaders heralding austerity as critical to our nation’s future facilitated shenanigans that cost nearly 30% of the $85 billion cut by sequestration this year.

This is why I woke up Thursday happy the shutdown ended but even angrier. Amidst this political theater, the real-world affects of federal funding cuts have received little attention. This is especially the case for people living with HIV/AIDS.

It’s time for that to change.

Earlier this week CNN shed light on the consequences of sequestration with a video featuring how cuts have affected programs and services at GMHC. The list is long and depressing: Food pantry bags cut 47%; substance abuse counseling sessions cut 20%; mental health counseling sessions cut 10%; 500 hours of legal counseling services cut; multiple layoffs; a furlough of the entire agency for 1 week; and much more.

Of course, our real focus should be on how these cuts affect the people who come to us for lifesaving services every day. When I spend time with them I hear stories that make my heart ache. One was shocked to learn that he could no longer receive additional portions from our hot meals program, the only nutritious meal he is able to get per day to help mediate the side effects of his medication. Another became distraught after learning that there was now a one-month waiting list to access individual mental health counseling.

As GMHC’s interim CEO Janet Weinberg shared in the CNN video, it’s not like there are other organizations with increased capacity to whom we can refer people in need. These cuts have caused every organization to bleed.

Just a few days before the shutdown, I joined several colleagues from the AIDS United Public Policy Committee for a Congressional visit day focused on the effects of the sequester. We met with several staffers of Members of Congress, including those representing our respectivehome states, Congresswomen Pelosi’s office, and the Health Legislative Aids for House Speaker John Boehner. Our visits with allies produced a unanimous message to bring home: We must actively pursue media outlets and allies to educate the public and lift the voices of people who oppose these draconian federal funding cuts.

Now that the shutdown drama is over, it’s urgent that we re-focus on sharing these stories. The stigma and fear still connected to HIV means that we have to find ways to both empower those willing to share publicly and protect those in need by being their voice when meeting with political leaders and the media.

We also must acknowledge that it will be extremely challenging for our allies in Congress sitting on the new super committee to roll back the sequester. We know that conservatives are already fighting to reduce the cuts to defense programs in sequester phase 2. They will not be as generous to the non-defense-discretionary programs that provide food, housing, and life-saving medication to people living with HIV/AIDS.

Despite these challenges, I still fundamentally believe that we can successfully restore federal support for the fight to end the HIV epidemic. We need to leverage public backlash against those responsible for the shutdown and debt ceiling scare to move political leaders to the center and support candidates in the mid-term election who understand our collective social and moral responsibility to care for each other and provide for our nation’s health.

AIDS United provides a critical structure for us to combine our time, talent, passion, and stories to call for policy change as a strong and unified lobby.

The article was originally posted in the AIDS United newsletter on October 18.

 
GMHC Mourns the Loss of Ellie Barr, Beloved Hotline Volunteer

EllieBeloved long-time Hotline volunteer and life-long political activist, Elinor "Ellie" Barr died on Sunday, October 13. Brooklyn-born, Ellie's extensive political activism included free-speech advocacy that resulted in expulsion from high school and participation in a London protest that found her carted off in a paddy wagon.  She worked with Brooklyn CORE for union integration and was a member in the peace movement for over 65 years including Grandmothers for Peace protesting regularly in Times Square.  A GMHC Hotline volunteer since 1998, Ellie was legendary as a counselor who skillfully and compassionately counseled a wide range of people about life-saving information on HIV/AIDS, safer sex and sexual orientation.  Ellie's face always lit up when talking about another passion - her love of children, including her three children, David, Daniel and Rachel, and three grandchildren about whom she often shared her delight.  Ellie was among the early faculty at Kingsborough Community College where she taught early childhood education for 40 years. David Barr, who first suggested Hotline volunteering to Ellie, was an integral staff member of GMHC for a number of years and continues his HIV/AIDS activism globally.  Ellie loved literature, film and the music of John Coltrane.  Ultimately, Ellie made an exemplary difference in the lives of thousands of people.   Ellie shared herself with all of us and will live on in our memories.  Details of a memorial service to be provided.

 
Helping HIV-Positive People Combat Fears and Return to Work: The April Watkins Story

AprilIn September, 2012, I was invited by the National Working Positive Coalition and the White House to participate in panel discussion on assisting people living with HIV to re-enter the workforce.  This one-day conference, held at the tail end of the International AIDS Conference, put workforce development back on the radar for HIV treatment advocates across the world.  When HIV-positive people are working, they are also more likely to take care of themselves, monitor their health, adhere to their medical appointments and take their anti-retroviral medications.  Going back to work helps prevent the spread of HIV – it keeps people living with HIV healthy and improves their self-esteem.  In my decade of employment at GMHC I have seen firsthand the huge impact that work has had on people.

Back in 1999, I was diagnosed HIV-positive.  Initially I was terrified.  While my family was supportive, I left my job to deal with my medical condition, but was then looking for something to do.  I found the Bowery Residents Committee‘s Adult Day Healthcare program (BRC ADHC).  I went to the program every day and it was great.  The staff taught us about living, when we thought we were going to die.  We learned sculpting, painting, yoga, horticulture-- all wonderful classes--yet I wanted more.  One day I saw a bus pull up and clients from another BRC program got on the bus.  Where were they going?  I soon learned they were going to Rye Playground.  I asked when the ADHC program was planning to go – it looked like fun. Then I was informed that HIV-positive clients did not have this opportunity.   I also learned about the BRC vocational program, where people got to do part-time work and be paid, and found out that yet again, we were not included.  This got my blood boiling to the point where I wanted to start organizing.  I was one of the first clients of ADHC to become part of the CAB. I and fought for HIV-positive clients to be able to access all programs – for us to be eligible to participate in the vocational stipend program, and go on day-trips.  The great news is we won!  I became the first HIV-positive client who got a stipend-position, and began my career.  Initially, I was hired as the receptionist for the stipend program.  I was promoted and my duties expanded.  Soon I was working on a back-to-work contract and helping people with substance-use issues return to the work force.
 
Through my work at BRC, I became well known within the workforce community, and eventually met some of the staff at GMHC, who were about to launch their own back-to-work program.  After talking with staff at GMHC, I knew I wanted to be at an agency where serving people living with HIV and AIDS was at the core of its mission.  I came to GMHC as a Job Readiness Instructor and was then promoted several times, eventually becoming the Assistant Director of Workforce, running the MATCH program (Moving Ahead Toward Career Horizons). 
 
At GMHC, I have changed people’s lives for the better, helping them move forward, despite worries and occasional setbacks.  I have witnessed our clients find themselves after feeling afraid.  What if I fail?  What if I get sick and have to leave the job?  I experienced that myself . When I fortified myself and went back into the workforce, the experience was transformative.  Having a job made my life so much better.  My team and I help take away the darkness that HIV can often bring.  We help people feel better about themselves, and let them see that they can stand on their own.  We offer an array of job readiness services including resume writing and interview preparation.  We offer a service called Power Suited by MATCH that provides professional attire so people are dressed properly as they look for work, which also boosts their confidence.  Life coaches volunteer their time to assess where each client is in their job search, and offer assistance on building up skills or tasks they need to be successful.  We also have a state-of-the-art computer lab, with interactive software, to teach Microsoft Word, Excel, PowerPoint, and other key skills that can lead to employment.
 
Too often our HIV-status can make us feel less than others.  Yet, when we go back to work, we combat our fears, reclaim control of our lives and we thrive.
 
I get up every morning eager to come to GMHC.  I know each day I will work with people who need me – who need our program and who want to succeed.  We are here to help people transform their lives.  We have a record of success and need more support to expand what we are doing – to help more people living with HIV and those at high-risk of HIV, to get back into the workforce.  Together, the MATCH team at GMHC is making miracles happen every day.