Sunday, January 30, 2011
I first became aware of AIDS, called GRID when I was an undergrad in 1982. It wasn't known what it was, just that it seemed to be a form of gay cancer.
So, "safe sex" was taught later in the mid to late 80s. I was a safe sex advocate and used my volunteer work to spread the message. I became aware of the bigotry from other gay folkls when I saw the gay couple come in the smaLL GAY BAR AND get shunned. Little did I know that in 1989 I was HIV negative, but didn't do very good at self-care. I had numerous partners and tested Poz in March of 90. All we had was AZT and it was what I was put on. I reacted to HIV very badly. I was so low on self esteem, angry, sad, confused and resentful of the people who talked about me behind my back in Nebraska. I got into some legal trouble and served some time for a couple offenses. I paroled in 1992 to Kansas City, because I wanted to get away from being gossiped about, the legal system and just start anew. I stayed in a homeless shelter in KC and eventually got my own apartment.
I had an AIDS buddy and things were looking good. I went to several community collges and then in 2002 completed my MA in Counseling and Guidance with an emphasis in Marriage and Family Counseling.
Prior to that, in around 1994 or so, I acquired shingles and thrush. I had various friends die during the years. I had a dear friend in DC that died in 1998 or some year when there wasn't the "cocktail" of drugs available. God blessed me I guess to outlive the others with my medications. I have been ND for a couple of years or so. I have been on the same regimen for about 5 years.
Hope that my story will inspire someone to share as well.
In around 1990, I was discriminated against by a dentist in family practice that told me they couldn't help me because they would have to clean their entire operating room. So, I found a dentist at a local dental college and they helped me. This past year I received dentures and was treated very humanely by the dentist at the dental school here.
Much of my family has distanced themselves so I live life with one BFF and am open to knowing other people.
In a follow up I asked Rod to explain to me what an AIDS Buddy was/is; his response.
An AIDS buddy is from the Shanti Project in San Francisco. It was done in Kansas City and Nebraska. What it is is someone who wants to be supportive, help a PWA or PWHIV with being a buddy. For example, be like having a mentor or someone who gives a crap, is the blunt way to say it. I had one in Nebraska and he was a minister.
Here is what it's called now and where you can find out more information about the program: http://www.shanti.org
Thanks Rod for sharing your story, and providing invaluable information. Your story WILL inspire other. Good luck to you. Be well.
Friday, January 28, 2011
Nearly a year ago when I heard of my HIV and Hepatitis C diagnosis; I was terrified. As if having HIV alone was not a frightining diagnosis I was dealt a double whammy. I was what is called co-infected. I was more scared hearing my HEP C diagnosis and the treatment that would insue, than I was hearing that I had HIV. I knew about HIV, but I knew nothing about Hepatitis C.
How could I have gotten Hepatitis C? Hepatitis C only happens to IV drug users and Celebrities like Pamela Anderson and Naomi Judd. This is how I related Hepatitis C. Though I did do recreational drugs, I never stuck a needle in my arm to do them. How did this happen to me?
This co-infection has become an epidemic in New York City and other places around the World, and it's occuring more in people who are NOT IV drug users. It is happening through those engaging in unsafe sex, spreading just as HIV does. 1 in 3 people infected with HIV are also infected with Hepatitis C. Nearly 4 million people in the United States alone are infected with HEP C and 1 in 5 people do not even know it. Just as with HIV you can prevent, it and be tested for it, and you too can have a chance at curing it. The key is catching it early to give you the best chance possible at curing it.
After 9 months since starting Hep C treatment (3 months post treatment), finally a happy day. I received my numbers for my 3 month follow up post Hepatitis C treatment, and the Hepatits C is gone, it has been cured! At week 6 into treatment I went from a Hep C VL of 7 million to undectable and have remained that way. At the end of treatment my CD4 was 240, my platelets were very low, and my wbc had dropped at one point to 1.0 and is now 3.0. My HIV remained undectable throughout treatment, and still is today.
Thankfully, my numbers are on the rebound. My CD4 has gone from 240 right after hep C treatment to 311 three months later, and is expected to keep climbing. My WBC was 2.0 after treatment and is now 3.0, My AST/ALT (liver function tests) once off the chart, are now in the 20's (normal), kidneys are functioning fine, and my platelet count is back to normal. It's amazing how everyday I am feeling better and better.
This news comes with cautious elation. Why? Because, not everyone is as fortuneate as I to have caught there Hep C early, to even treat it, and further, cure it. For many the battle with HEP C is life long. So, while my case was a success story, I keep in mind all of you who are currently fighting Hepatitis C. Stay strong, hang in there, this to shall pass.
To everyone: If you do not know your Hepatitis C status I URGE you to get tested. Type in your zip code below and find a testing location near you. Many of the places that offer free HIV Testing will also offer Hepatitis C testing or be able to refer you to a place that does. Visit http://www.aids.gov/ to find a test location near you.
If you would like to contact me privately you may do so: just e mail email@example.com
Take care and be well my friends.
Posted by Kevin Maloney at 6:48 PM
Wednesday, January 26, 2011
Thank you Joel Burns. Your words touched off a firestorm of support for the LGBTQ youth community. This was your defining moment, and I hope that your re-election is won by a landslide victory. I will do ANYTHING to help - I am sure my readers will too.
Posted by Kevin Maloney at 6:30 PM
Friday, January 21, 2011
My name is Herman Young. I am HIV+. I was diagnosed in 2004.
I have a very unique story. In 2006 I started to show signs that my body was losing the fight with HIV. I got Shingles and lost a lot of weight. My lymph nodes were very swollen to the point that my Doctors did a biopsy. I was unofficially told that I had Hodgkin’s Lymphoma, so I moved from Chicago back to Michigan to be closer to family. I was not taking any form of meds yet. I went to get a second opinion and an infectious disease Dr. suggested we start the drug Atripla. Within 2 weeks my swollen glands were gone and I was told that I did NOT have Lymphoma! Happy News! Within a few short months I was undetectable!
About 9 months into treatment my labs showed that the Atripla had raised my cholesterol to dangerous levels, so my Doctor prescribed Lovastatin to help lower my Cholesterol. Within 12 days of taking these two drugs together I suffered Acute Liver Failure. I spent 3 weeks in the hospital with Encephalopathy. The Doctors were waiting to see if my liver would recover but it did not.
At the recommendation of my primary care physician I went to the University Of Michigan Hospital in Ann Arbor to see if they could help me. Long story short, after many stays at U of M I was put on the transplant list and I was sent home to wait. I was told it could be days or even weeks! Amazingly, I was called 9 hours later and told to return to U of M, they had a liver for me! I hadn’t even unpacked! On February 25th 2008 I had a liver transplant. I am the very first and only HIV patient in the State of Michigan to ever have a liver transplant to date! 7 days later I was sent home and have been doing extremely well ever since.
I am NOT ashamed of being HIV+, it has made me a better man! Generally my status is one of the first things out of my mouth whenever I am introduced to ANYONE! It has been very empowering because many people do not know someone that is HIV+. I like to put a face to the disease, and when they see that I am a very nice person I believe that their views are changed a bit. I am all about Stopping the Stigma!
I was looking for your email address because I had some pictures that I wanted to send you to show you how far i've come, and even though it has been a major challenge, I am very grateful for my health, my life, and the fact that I still have a wonderful outlook on life!
I really appreciate your interest in obtaining stories of people rising up to HIV.
For me, I volunteer for my local HIV agency LAAN (Lansing Area Aids Network) We have a food pantry so I drive clients from pantry to their homes. I also volunteer my time at out testing sites, and at various college locations encouraging students to get tested.
Here are 4 pictures of Herman: Herman now, the day before his liver transplant, day after transplant, and 3
If you would like to e mail Herman his e mail address is: firstname.lastname@example.org
If you have a story you would like to share. Please send an e mail to email@example.com
Wednesday, January 19, 2011
Maybe it is time we put pressure on MH, A4A, BBRTS, and SO many other sites that have exploited the gay community for way too long, all the while lining their pockets with our dollars. I have said many times before that these venues have become the catalysts to new HIV infections. I think it is time we begin to call out these sites, and that they begin to take action and really care about its members.
Did you know that in 2007 MH made 30 million dollars from its members? That is not including its side ventures. While I understand the responsibility ultimately lies with us, come on MH and others, step up to the plate. Follow up your MHcares rhetoric with real dollars, and help with the ADAP crisis your site and so many others have helped contribute to.
Posted by Kevin Maloney at 5:45 PM
Tuesday, January 18, 2011
For my critics out there who disagree with my stance on MSM Websites. First, I appreciate open dialogue. Let’s keep the conversation going.
Second, I take responsibility for my dual diagnosis. I have since day one. It would be ridiculous for me to say MH, A4A, BBRTS, BB, etc…..gave me HIV and Hepatitis C. That is NOT what I am saying. What I am saying is these websites have become CATYLYSTS to behaviors which lead to HIV infection and other STI’s.
The facts speak for themselves and one can draw conclusions and inferences based on these facts or ignore them completely. I choose to know the facts, and draw conclusions and inferences based on this data. If you would like to look at this factual data then I invite you to visit http://www.cdc.gov/hiv/topics/surveillance/incidence.htm
It is not facts alone though that have riled me and risen me to speak out about these websites. I speak with passion about this particular issue, because these sites were the catalyst behind my behavior’s and ultimate infections. Just as for so many the “brick and mortar” establishments were in the 80’s and early 90’s.
While, we know that HIV/AIDS is NOT a gay disease, the perception of it being such is still widely perceived, the stigma, unfortunately, 30 years later, is still around today. It’s especially disheartening to all of us in the gay community when numbers come out from the CDC referencing 52 percent of all HIV infections are within the MSM community, and that year after year there is a continual climb within this subset of the population.
Did you know that in the 90’s for a brief period that HIV infections among MSM and overall was declining, and then started skyrocketing in the late 90’s and still today where there has been a steady incline in new infections year after year. Just as those working in HIV/AIDS were beginning to see a glimmer of hope and get somewhat of a handle on this virus; the wheels starting turning backwards. What happened in the 90’s? The Internet; and with the advent of the internet came virtual bath houses.
Someone also had written an anonymous comment that “it’s not the venue; it’s the behavior we need to change”. Well, working on behavior alone is not working. While we have learned to combat this illness from the ideological ways of yesteryear, we must continue to improve upon these methods and create new ways.
I will not give up on this issue, despite what many of my critics say. I will continue to put pressure on these sites, and bring to light what I believe is causing a continual; rise in new HIV infections year after year.
Further discouraging is that these sites are now set up on myspace, facebook, and twitter targeting the MOST at risk young individuals.
If just one vulnerable young adult stays off these sites because of my advocating, then I will be satisfied. I did not ask for these diseases, and I have not asked for this responsibility to take on these websites. I will keep rising up, standing out, and speaking up for what I believe. I hope you have the courage to as well.
I admire the courage of Larry Kramer and all those who like me are out there every day fighting for what they believe. Stay true to yourselves, and be well.
Posted by Kevin Maloney at 2:46 PM
Friday, January 14, 2011
I commend Facebook as this is a big step in the right direction in the fight to curb HIV/AIDS amongst the most vulnerable population. Thank you for realizing that this is an irresponsible social networking website.
There is still one more MSM social networking website that has prominence on your site, that too, is an irresponsible social networking website that has become the #1 catalyst in the spread of HIV in the US.
This fan page is manhunt.net. I implore you to look into this sites business practices and false advertising.
There is healthy social networking and since of community amongst the LGBT community and especially those living with HIV. Including the pages on your site entitled pozIamers (http://www.poziam.com), and Who's Positive (http://www.whospositive.org) and Poz Magazine (http://www.poz.com)
The manhunt.net page undermines FB integrity and I feel is a slap in the face to all those on face book who advocate, educate, and care so passionately about preventing this terrible illness. Please review my letter I sent back in August, and please take into consideration removing the manhunt.net fan page from Facebook.
Again, I thank you for taking down the Adam4Adam fan page, and I appreciate you looking into manhunt.net and removing this page as well. I look forward to your response.
Letter written back in august to Facebook.
Wednesday, January 12, 2011
Gabbie, the news of you opening your eyes, opened mine wider than ever to the possibility of one day working in Public Service. I send you my well wishes, the LGBT community is behind you, and America is behind you.
Your eyes opening have opened the eyes of many across this great land and around the World. You have become a beacon hope. Keep fighting, Gabbie.
I wish you, and all victims of this tragedy a speedy recovery and my heart goes out to those who have lost a loved one in the senseless crime.
Posted by Kevin Maloney at 9:52 PM
Did you know? Congresswomen Gabby Gifford’s and the intern who is credited as having saved her life were pro-gay rights and both serve or have served on committees addressing issues revolving around LGBT initiatives. Daniel Hernandez once served on the Tucson Commission on GLBT issues, and Gifford’s is currently one of 91 members who serve on the Congressional LGBT Equality Caucus.
The Congressional LGBT Caucus was formed in 2008 by two openly gay US Representatives Tammy Baldwin of Wisconsin and Barney Frank of Massachusetts. The caucus serves to advance equal rights for LGBT people, repeal discriminatory laws and educate lawmakers on gay issues.
The following is the mission state of the caucus:
The mission of the Congressional LGBT Equality Caucus is to promote lesbian, gay, bisexual, and transgender (LGBT) equality. The bi-partisan LGBT Equality Caucus will be comprised of Members of Congress who are strongly committed to achieving the full enjoyment of human rights for LGBT people in the U.S. and around the world. By serving as a resource for Members of Congress, their staff, and the public on LGBT issues, the Caucus will work toward the extension of equal rights, the repeal of discriminatory laws, the elimination of hate-motivated violence, and the improved health and well-being for all regardless of sexual orientation or gender identity/expression.
Recent legislation which has passed as a result of this caucus is the Hate Crimes Act of 2009.
I have sent my condolences to the caucus and have asked that they pass along my sentiments to Congresswoman Gifford’s. If you would like to send your condolences and read more about this caucus visit the website of the Congressional LGBT Equality Caucus. Click on contact us on the left hand sidebar of the site and send an e mail with your well wishes, or you can click on the link below.
Posted by Kevin Maloney at 11:27 AM
Sunday, January 9, 2011
It is like the facebook for those of us living with HIV or affected by it. I will be speaking about my story on the radio (blog talk radio).
Below is the information posted on poziam
Posted by Kevin Maloney at 6:39 PM
Saturday, January 8, 2011
It’s that time of year in most parts of the country. Cold! Though, even if you are not living in a cold climate you are still prone to the Flu. Every year I choose to vaccinate myself against the Flu. Last year I vaccinated myself against the regular Flu and H1N1 (swine flu) – wow, where did that term go? It seems like just yesterday it was all over the news. This year’s Flu vaccine was an all in one. It included the seasonal Flu and H1N1.
In late February of last year I became really sick with Flu like symptoms. A headache for days, body aches, could barely leave my bed, fever. I felt awful. Though, I knew it couldn’t be the Flu, because I had the vaccine for it.
So, I went to my doctor, and he was going to write it off as a virus and told me to take OTC meds and drink lots of fluids and rest. Though, I had a gut feeling it was something more serious. I asked my Doctor; do you think it could be HIV?
He then said – it may be possible given my recent sexual contact (2 ½ weeks prior to this visit). So, he did some blood work and 5 days later I received that dreaded call from the Doctor’s Secretary. “Your results are back and the Doctor wants to see you, when can you come in?” Previous times when I would have an HIV test – he would tell me over the phone, everything is ok, checked out fine, etc…
So, I went right in after the phone call. I knew at that point what it was. I knew what it was when I went in 5 days earlier. I had sub culmed to the fact it was HIV, and I was right. The doctor came into the exam room and showed me the test results. He had done a very expensive and extremely sensitive HIV test called DNA/PCR. This test can pick up the virus within 2 weeks of being infected.
This was not a false positive. He told me it’s not a death sentence, and the visit ended with the question “how are you feeling psychologically”. All I know is I just wanted to get out of there and figure out how to rid the HIV from my system.
So, I left and if you read “my story” at the top of my blog – you will be able to fill in the rest of the details. The point of this blog entry is: Be aware of any physical symptoms, recent sexual activities, and seek medical advice if you feel it could be something more than a standard virus; AND ask your doctor the question, could it be HIV? It could be just a standard virus and not HIV.
Many people do not get symptoms when they become infected with HIV. I guess I am fortunate that I did, and was able to seek treatment and start ART (Anti-Retroviral Therapy) right away.
If you do not have a Doctor, you can find a free HIV testing location near you by going to http://www.hivtest.org and typing in your zip code.
Stay safe. Get Tested. Be Well.
Posted by Kevin Maloney at 11:40 AM
Tuesday, January 4, 2011
Posted by Kevin Maloney at 11:02 AM
Monday, January 3, 2011
Even so, 55% of adults, including 28.3% who are considered at high risk for contracting the virus, have never been tested for HIV, according to CDC statistics released for World AIDS Day on Dec. 1.
"We need to do more to ensure that all Americans have access to voluntary, routine and early HIV testing in order to save lives and reduce the spread of this terrible disease," CDC Director Thomas R. Frieden, MD, MPH, said during a teleconference.
The American College of Physicians also is asking physicians to encourage all patients older than 13 to be tested, regardless of their risk factors.
"Screening can be offered at the time of a routine exam," said Donna Sweet, MD, a member of the ACP's clinical guidelines committee and an internal medicine professor at the University of Kansas School of Medicine in Wichita. "Early diagnosis is essential to help HIV-infected individuals live longer lives by receiving lifesaving treatment and care."
An estimated 1.1 million Americans live with HIV, including 200,000 who don't know they're infected. About 56,000 people in the U.S. are infected with the virus annually, equal to a new infection every 9½ minutes, the CDC said.
Thirty-two percent of people infected with HIV progress to AIDS within 12 months of being diagnosed.
The faster new cases are identified, the earlier physicians can discuss treatment options and help prevent further spread of the virus, said Kevin Fenton, MD, PhD, director of the CDC's National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention.
"With more tools and opportunities to fight the spread of HIV than ever before, now is the time to reverse decade-long trends in infections," he said.
Two studies released in the past year provide evidence that antiretroviral medicines used to treat HIV patients can also help prevent HIV infection. In July, the White House announced the National HIV/AIDS Strategy with an aim of increasing testing, reducing infection rates and raising to 90% the number of HIV-infected people who know they are carriers.
Posted by Kevin Maloney at 10:16 AM
“Immediate scale-up of the entire WHO guideline package may be prohibitively expensive in some settings,” said lead author Rochelle P. Walensky, MD, of the Massachusetts General Hospital in Boston. “In many resource-limited settings, the relevant policy question is: What to do first?”
Since 1981, AIDS has killed more than 25 million people, and about 33 million people—the vast majority of whom are living in low- and middle-income countries—are now living with HIV.
Initially, resource-limited countries could not afford to provide ARV therapy to citizens living with HIV. Now, through the concerted efforts of governments, WHO and other international agencies, more than a third of the people in resource-limited countries who need ARV treatment are receiving it.
Unfortunately, many remain without access to ARV therapy. To help maximize the rollout of treatment in developing nations, agencies often base their HIV treatment and care policies on recommendations spelled out by WHO in its ARV therapy guidelines originally published in 2006.
The WHO HIV treatment guidelines were revised earlier this year and include three major changes: initiating ARV treatment when CD4 cell counts fall below 350, rather than waiting until they reach 200; replacing the ARV drug stavudine with the less-toxic but more expensive tenofovir for first-line treatment; and switching patients to second-line ARV regimens when the first-line regimen fails.
However, many resource-limited countries are still struggling to implement the 2006 guidelines. In turn, it remains unclear as to which of the revised recommendations should be prioritized.
To address this question, Walensky and her colleagues conducted a mathematical model using South African clinical and cost data to project survival and costs in a hypothetical group of South African HIV-positive patients under different WHO guidelines prioritization scenarios.
According to the report by Walensky’s group, earlier ARV treatment initiation increased the likelihood of five-year survival from 80 to 87 percent and showed substantially improved early clinical outcomes compared with either using tenofovir for first-line treatment or providing second-line regimens.
In settings where ARV treatment is already started at 350 CD4s, the authors add, switching stavudine to tenofovir offers clinical benefit and is less costly than adding second-line regimens.
Finally, although providing access to second-line ARV treatment regimens would result in more clinical benefits than simply providing greater access to tenofovir, the cost of this change in strategy would be substantially greater.
As with all mathematical models, the accuracy of these findings depends on the assumptions included in the model and on the data populating it. Nevertheless, the authors conclude, in places where resources are limited and it’s impossible to immediately implement all the new WHO recommendations, starting ARV treatment at a CD4 count of less than 350 would provide the greatest survival advantage and would be very cost-effective.
Importantly, these findings "should help avoid the complete dismissal of the revised WHO guidelines on the basis of cost and should help policy makers adjust their ARV treatment rollout program strategies to maximize their clinical benefits and cost effectiveness."
AIDSmeds - Top Stories : Earlier HIV Treatment Should Be Priority in Developing World
Posted by Kevin Maloney at 10:00 AM
Saturday, January 1, 2011
I went into treatment on 100 mg of Zoloft and increased it up to 150 mg. However, this was not enough to tame the anxiety I was feeling so I asked to be prescribed clonazapam; 1mg tablets. At the height of my treatment I was up to 3mg a day and at the end was able to taper down to 2 mg. I then began 4 weeks prior to treatment a taper to 10 mg of lexapro from 150 mg of Zoloft. THIS WAS MY BIGGEST MISTAKE IN TREATMENT.
My advise would be to not end your psychotropic medicines until well after your Hep C treatments or even change the medication mid course (unless of course at your Dr's advice).
I, nor the doctor that prescribed the taper to lexapro was taking into consideration the residual (after effects) of ending treatment. Just because Hep C treatment ends, doesn't mean that all side effects immediately end.
So, now I am nearly 6 weeks post Hep C treatment. I am ridding the 2mg of clonzapam from my body via a taper to lorazapam, and am increasing my 10 mg dose of lexapro to 20 mg. The goal to keep reducing the lorazapam every 2 weeks and eventually just be on the lexapro for a while.
Right now, I am in the midst of slight bit uncomfortable benzo withdrawal. I know in a week I will be feeling better, but I am glad I went to seek out help rather than trying to cut the benzo out cold turkey as was my original plan.
So, my advise would be DO NOT change medications mid course or at the end of treatment. Consult with your doctor, psychologist and/or psychiatrist regularly.
I'll let you all know how I feel in a week!
Posted by Kevin Maloney at 7:48 PM
Continue to stay on top of my health
Eat more greens
Remember to take my Vitamin D and Fish Oil every day
Begin a rigorous exercise routine
Pass my classes
Make more Friends
Launch something very exciting - details to come in 2011.
Maybe if time permits – meet someone nice.
And I will keep advocating, keep educating, and keep communicating via my blog my experiences, strength, and hopes living with HIV and POST Hepatitis C.
Even, if sometimes I wonder if anyone is reading my blog, but fans of Lady Gaga. I will continue to write, for the fans of Lady Gaga, and for anyone who happens to stumble across my blog. I wonder if I can get Lady Gaga herself to follow me on twitter or on my blog?!? And Katy Perry? J
Ok, so, two more New Year’s Resolutions;
1) Get Lady Gaga to follow me on Twitter and/or my blog
2) Get Katy Perry to follow me on Twitter and/or my blog
Posted by Kevin Maloney at 1:16 PM