Who's Positive

Like the title says this is a bit off topic, but I love these commercials. I have always felt that saying things are "gay" is so offensive. I love that GLSEN is doing these PSA's because people, not just young people, don't think before they speak. So I figured I would share that I totally support their efforts in this. Here is the link to their site: http://thinkb4youspeak.com/

Gosh I am frustrated.

Monday I called to get my meds refilled. I didn’t realize there were no refills, so I had to call my doctor’s office to get her to refill it, she did verbally. Then the mail order pharmacy needed it in writing so then I had to wait for my doctor to send in the prescription, by the time that was completed and after follow ups on Wednesday, Friday I was able to get it filled. I thought I would have my meds today. Just as they were submitting it they said ohh your deductible is 900 something dollars, I was like uhhh… why? They said it’s a new year and you have to meet your 2,000 deductible. I’m like in crisis mode now bc after the delay I am down to one pill and being laid off I don’t have 900 bucks and its 4:30 in the afternoon. So I called my ASO, I conferenced them and the mail order folks in confirmed the address that it would be sent to and thankfully we were able to work it out – I generally don’t have any deductible at all with the Atripla Co-pay card. Unless I haven’t met my deductible which I generally meet pretty quickly bc of my meds.

My caseworker called at 6pm and said you are all set you’ll get them on Saturday (today)… but… I didn’t. The mail order wasn’t paying attention and mailed my meds to my Dad’s house in PA (that’s where I sent them last month as I was staying there for a few weeks over the holidays) Now I had to call the emergency number for the mail order folks and explain I haven’t gotten my meds, I called my Dad to confirm he got them and now they are trying to figure out how I can get meds for tonight. What a frustrating night. I don’t really want to go without my meds but I may have to as they may not be able to override me getting another bottle since I just had it filled yesterday. *rolls eyes* Now I wait to see what CVS and the mail order, if anything can work out. Tick tock, tick tock.

The picture is a screen shot of what my meds cost back in November 2010.

First, I want to applaud ABC and the producers of What Would You Do? who recognized that the HIV/AIDS epidemic continues to plague our society with ignorance, discrimination and a stigma which still affects those infected and affected by HIV/AIDS.

Additionally, I want to applaud Danny Logan. This 24 year old, fought back against the stigma and discrimination. This young man used his story, his face to humanize HIV. He used his face and story to speak on behalf of all of us infected and affected by HIV/AIDS.

Please allow me to take off all my 'hats' I wear and be blunt and emotional without representing anyone other than myself.

I am fed up! Fed up with the lack of respect and dignity offered to those who are infected. I'm fed up with the having to feel like a second class citizen. I hate having to think that I should not post all of my VOLUNTEER work I do within the HIV/AIDS community on my resume in fear I will be disqualified, I'm fed up with how those infected can't get their medications, PEOPLE these are LIFE SAVING medications. You can't tell me that because these people infected cannot afford these medications that they are not being treated like second class citizens? To think that someone will not shake the hand of another human being because they are ignorant makes me think second class citizen.

Well let me tell you, I'm no second class citizen, I can't afford meds because like MOST people in this world I cannot afford the THOUSANDS of dollars a month for them. This should not make me a second class citizen and it should not make someone not want to shake my hand. Danny I'm glad you did what you did, I'm glad ABC ran the program and showed that this despicable behavior continues. Thank you to the customers who stood up for Danny, what I don't think either of them realized was that not only did they stand up for Danny they stood up for me, and the more than 1.3 million in the US and the millions more round the world infected with HIV/AIDS.

I encourage everyone to watch the episode below forward it off, share your thoughts about it. Don't be silenced that won't help. Speak out - speak out LOUD and join in this fight against HIV/AIDS. (The episode can be found at http://www.whospositive.org/journal/Tom for those who do not see it embeded below) *Also follow me at http://www.facebook.com/thomas.m.donohue

The hats I wear, well I tip each and every one of them to Danny, the customers who stood up to them and those who are ignorant for helping to prove a point that HIV/AIDS stigma & discrimination still happens - 30+ years later.

Tom Donohue

Follow Danny Logan on facebook!

I decided to dig out my paperwork from the day I got my diagnosis result so I could see for sure what day exactly that was. I know I always thought I wouldn’t forget that date, but while I totally remember the events of the day I actually forgot the date. Why I keep thinking even after having looked at the paperwork that it was March of 2001 I’m not really sure lol. As of May 31st of this year I will have celebrated 10 years since receiving my diagnosis. I also just celebrated my 34th birthday which was a really good day. I am so grateful for every day!

I am now doing more work for my friend and favorite author, Yasmine Galenorn. I had been doing mod work for her discussion group and forums for a couple of years and in Jan I added being her fan mail assistant to my duties. I enjoy it so much but it keeps me super busy.

Do People Care about AIDS?
Paul Kawata, Executive Director, National Minority AIDS Council

When you’ve been fighting AIDS as long as we have, it’s easy to forget that not everyone shares our sense of urgency about this epidemic. Recently, a friend said to me “You have to remember, people don’t care about AIDS anymore.” While I can certainly understand how some could draw this conclusion, I refuse to accept it. It’s our job, as a community, to make sure that Americans understand the devastation this epidemic continues to reap on our neighbors, friends and loved ones.

This is why programs like AIDSWatch, which will be taking place this week in Washington, DC, are so critical. They provide an opportunity for people living with this disease to tell their own stories, in their own words. It allows brave men and women to educate their members of Congress, not only about the terrible toll of this epidemic, but also the importance of a sustained and committed response from our government.

Still, given these difficult economic times, much of the public’s attention is focused elsewhere. How do you stay relevant and essential? This is the question facing many AIDS organizations. As this disease is constantly evolving, we as a community must also be flexible and adjust to new political and economic realities if we are to be successful.

Here are some thoughts on how you can ensure your agency’s future:
• Be the Best
• Evolve and/or expand your mission
• Consider becoming a Federally Qualified Health Center
• Merge

Be the Best
In order to be the best, your agency should strive to occupy a unique niche. This might mean that your agency is the only organization in your area that directs its services to a specific segment of the population, or that your agency is the best at providing a specific service within the community at large. Either way, you should always focus on providing your services in the most cost-effective and efficient ways possible.

Between state budget cuts and potential federal budget cuts, funding may become even more elusive than it already is. Tough decisions will need to be made. As AIDS Drug Assistance Program (ADAP) lists grow, and more people lose their jobs and subsequently their health insurance, funders will be forced to make decisions that could determine the survival of your agency. If they have to choose between your agency and all the others, “Why should they choose you?”

Expand Your Mission
Now is a good time to consider expanding your mission. You’ve already developed an infrastructure to serve the HIV/AIDS community, maybe its time to look at providing that service to others. Some AIDS food programs have expanded to serve people with other diseases or the elderly. Another tactic may be to expand the types of services that your agency offers to the HIV/AIDS community. Either way, you must be sure that your agency and your staff have the expertise and the passion to support these expansions.

Become a FQHC
Become a Federally Qualified Health Center (FQHC). It’s a good way to insure your future and there is a need for them in our communities. However, becoming a FQHC is a difficult process and will probably require you to hire outside consultants. This program is run by Health Resources and Services Administration (HRSA), for more information go to: http://bphc.hrsa .gov/policy

Many of our communities do not have adequate medical infrastructures and FQHCs are an important component to filling current gaps in services.

Merger
I know merger is a difficult concept, but sometimes it can be the best thing for your community and your constituents. If your agency is spending more time securing funding than serving your constituents, it may be better to combine resources with an organization that could assist in more efficiently and effectively providing those services.

If none of these options are possible for your agency, you may need to seriously consider shutting down. While this is always a difficult prospect for anyone to imagine, we must always do what’s best for our community and our constituents.

If you must shut down, it is essential that you close in a responsible manner. Tell the truth about your closure, try not to blame others, and remember we all deal with loss in different ways. Help your clients find new agencies to meet their needs and insure confidentiality of their medical records. Your community is going to be looking for answers. Keep them informed of what is happening and try to minimize the blame. Get in front of the story before rumors have a chance to take hold.

The largest payer of HIV/AIDS services, prevention and research is the federal government. No state government, no private foundation, no pharmaceutical company can take the federal government’s place. However, with the new members of Congress, it’s going to require a new strategy. We need to have strong policy/advocacy networks in states where we have key Congressional leaders. We need to be able to reach across parties. We need to build upon our advocacy efforts to enhance our community’s level of sophistication even more than we already have.

The public’s attention may be focused elsewhere, but that doesn’t stop our work. As long as there are people living with HIV/AIDS and as long as there are people at risk for getting HIV/AIDS, there will be work and responsibilities. It just makes it harder and requires us to play the game smarter then anyone else.

Thank you for all that you do for your community, people living with HIV/AIDS, and people at risk for getting HIV/AIDS. You may sometimes feel like people have forgotten about AIDS, or that they don’t care, but please know that this isn’t true. And also know that I will always care and be grateful for all you do on behalf of our diverse communities.

I am going to move all of my blogging to http://blog.nmac.org Please check back for my latest musings!

Yours in the struggle,