Living With HIV: Not A Death Sentence, A Life Sentence
Living With HIV: Not A Death Sentence, A Life Sentence
FLORIDA RANKS FIRST in the country in the number of people diagnosed with HIV (6,120 in 2009). Florida ranks first in the country in the rate of new HIV diagnoses per 100,000 (2009). Florida ranks third in the country in the rate of new AIDS diagnoses per 100,000 (2009). Florida ranks second in the country in the rate of HIV prevalence (2008). Florida ranks fourth in the country in the rate of AIDS prevalence (2008). Miami ranks first in the country in the rate of new HIV diagnoses per 100,000. (2010) Miami ranks second in the country in the rate of new AIDS diagnoses per 100,000 (2010) Florida has the third longest ADAP (AIDS drug assistance program) waiting list in the country. (Facts from Care Resource).
The facts are shockingly clear, HIV and AIDS are still infecting and killing thousands of people a day, but the good news is that it’s now a manageable disease. “It’s sad that people believe that it’s a death sentence,” says Dr. Steven Santiago, Medical Director for Care Resource, a nonprofit, multicultural, community based AIDS service organization. “Today it’s a manageable disease. In some ways its easier to manage than diabetes.” With the reports of a new drug that will prevent HIV infection in healthy people there is hope, however, according to the Centers for Disease Control and Prevention there are approximately 1.2 million people in the United States living with HIV infection and 1 in 5 are unaware of their infection. In fact, Care Resource has shared a report that states that every 9.5 minutes, someone in the U.S. is infected with HIV. The war against AIDS is a battle that has not been won yet and there have been many casualties. An estimated 717,025 people with AIDS have died in the U.S. since the beginning of the epidemic (according to Advert-international HIV &AIDS Charity).
In 1981 when the first cases of AIDS were reported in the U.S. the cases rapidly increased, as did AIDS deaths. The numbers continued to grow dramatically until 1996 with the widespread use of combination antiretroviral therapy. While people with AIDS are surviving longer and the numbers of those living with AIDS are steadily increasing, the disease is still out there. Reports say that an estimated 21% of people living with HIV in the U.S. are undiagnosed. Prevention has always been a major weapon in the battle, acknowledging the infection and controlling it is one of the utmost concerns of health organizations today. The infected continue to spread the disease, unknowing that they have it, and many who are infected are in denial, not taking responsibility for their own life or the lives of others.
At one time a HIV positive diagnosis was considered a death sentence, leading to AIDS. Today, it’s not a death sentence but it’s still not welcome news. “I’m scared to tell people, but you have to accept it,” said Quilvio Rodriquez a 26-year-old Miami dancer who has been HIV positive for just over a year. Rodriquez, at first reluctant to go public with his news offered to share his story. “I thought I was doing the right thing by protecting myself. I was in a relationship and had unprotected sex.” Not realizing that his partner had HIV, Rodriquez contracted the virus and it has changed his life. His relationship ended and he was hesitant to share the news with friends. “It’s scary to tell people but you find out who your real friends are and friendships grow stronger.” Part of the stigma of an HIV positive diagnosis is being shunned by friends, family and work. “It took me a long time to be able to talk about it without being emotional,” says Rodriquez. Still healthy, Rodriquez does not take any medications. Working as a waiter and a dancer, his financial history prevents him from qualifying for support from programs like Ryan White and AHF and without insurance he can’t get a case worker. Rodriquez, who recently performed with Dance NOW! Miami, remains hopeful and tries to keep healthy. “I’m trying to stay positive about being positive.”
Diagnosed with HIV 22 years ago, Richard Burton Jr., a Miami Beach resident, actor and AIDS activist, volunteered to share his story
with the hopes that it might benefit someone. Burton, who is quite active in the Miami Beach community, proudly shares the fact of his medical condition and the fact that he’s healthy. Burton wasn’t always the picture of health as he is today, he was very sick in the late nineties. “I was wheelchair bound with a nurse pushing me down Lincoln Road.” Burton attests the new medications for his turnaround. “After my body acclimated to the new medications I was invited to a study at the University of Miami.” Burton has struggled with many health problems during the years, including liver failure, but has survived and considers himself lucky. “I feel like a soldier that has walked through a battlefield, scared and bruised yet stronger. I have contributed to the care and attention of an ongoing life.” Like many who first were diagnosed in the early years, Burton thought it was a death sentence. “It was the concern that I wouldn’t be there for my family,” says Burton as the reason why he chose to fight for his life. “I started taking medications 21 years ago. It made me feel worse. I’ve been on a brutal regime since ’94.” Offering Wire Magazine before and after photos, Burton wants the world to know that you can’t give up. “HIV is not a death sentence, but a life sentence. You have to make a life plan to take care of yourself every day.” Burton volunteers for several AIDS health organizations and is a member of the Miami Beach Community Health Center Support Group. Burton is adamant about being vocal on the subject. “You have to toughen up and get rid of your silly habits.” Burton also considers himself lucky because insurance takes care of his medications that cost approximately $75,000 a year. Burton has taken control of his life and has a positive attitude about fighting the disease. “It’s about saving our own lives and our buddies beside us.”
While prevention is at the top of the list in the fight against HIV/AIDS, the facts are all too obvious that HIV infection continues. Education is so important. Doctors and health care workers report new cases daily and it’s shocking to learn that more than 50% of new infections are among the under 25 set. Many people still feel there’s a stigma to being tested and are afraid of getting their results. “Many patients still feel that HIV is a death sentence,” says Sami Shafig, Clinical Assistant Professor of Pharmacy Practice and Lead HIV/AIDS Clinical Pharmacist at Walgreens, one of the many places where free AIDS tests are administered. “As a clinical pharmacist, I have the opportunity to educate them and provide them assurance that HIV is no longer a death sentence. If a patient follows the instructions provided by their healthcare provider, there should be no reason why they cannot live to their normal life expectancy. I have several patients who acquired HIV via perinatal transmission, and now they are 25 years and older. Patients are living longer and therefore it is imperative that they adhere to their regimen to achieve a continuous viral suppression. Maximal viral suppression results in lowering of the transmission and therefore an important public health concern.”
Every healthcare worker, pharmacist or doctor interviewed stressed the importance of seeking immediate medical care. “First and most important, always seek medical care from an HIV specialist,” stated Shafig. “You can go on the American Academy of HIV Medicine’s website and locate an expert in your area. The second key person in your care is a medical case manager. You must have a case manager to help you apply for various State and Federal funding available. There is no reason for a patient to be HIV-infected in the United States of America and be without HIV therapy. Depending on their income, they can qualify for straight Medicaid, Medicare part B, ADAP (AIDS Drug Assistance Program), PAP (manufacture’s patient Assistance Programs), or co-payment assistance programs. Please always make sure you have a case manager so you can benefit from all of these services.” Michael Kahane, Southern Region Bureau chief for AIDS Healthcare Foundation stressed that the most important step after discovering that you are HIV positive is “to get into care as soon as possible with a competent doctor they like and trust. The doctor and the patient need to have a “partner in care” attitude.” Of course treatment is necessary but Kahane also stresses the importance of “getting tested” in the fight against HIV/AIDS. “HIV is at epidemic levels throughout the South and this is an area where there is significant stigma attached to the disease and a lack of providers. The most important strategy is to test as many people as possible for HIV, identify those who are positive and get them into care. 20% of people living with HIV do not know they are positive and that 20% is responsible for 75% of the new infections. The only way to manage this disease is to expand testing programs and link those who are positive into care. This year AHF plans to test 50,000 people in Florida.”
With a disease that has been around since 1981 the public should be more informed and educated with the facts about HIV/AIDS. When asked what was the reason that South Florida numbers were higher than anywhere else in the country, the doctors were mostly at a loss for answers. “A lot has to do with continued denial,” said Dr. Santiago. “There are lots of minorities engaging in unprotected sex. Bi-sexuals still engage in lots of unprotected sex. There are a lot of young people with STDs. My patients admit to having unprotected sex. People don’t realize that getting an STD increases your chances of getting HIV.” Florida ranks first in the country in the number of people diagnosed with HIV and first in the country in the rate of new HIV diagnoses per 100,000. Dr. Santiago believes the reason for this is denial, bi-sexuals who engage in unprotected sex and minorities with a lack of education and denial. “Many minorities are diagnosed and already have AIDS.” The majority of doctors and healthcare workers agreed that education is key to stopping the HIV virus.
Filmmaker Charlie David hopes his new documentary Positive Youth will help educate the
masses. “Positive Youth features four young people who bravely share their personal stories in living with HIV,” says David. “They offer a raw, uncensored look into their daily lives: the shock of receiving an HIV positive diagnosis, what it’s like on the dating scene, battling stigma within their work, social and family life, and coming to the realization that life is not over – there is a future for them.” One of the purposes of making Positive Youth was to help change the perception of how the world views HIV. “HIV transmission is rapidly rising among our youth,” adds David. “There seems to be an apathy towards it and a safe sex fatigue going on that’s simply dangerous. The challenge is of course multifaceted and different socioeconomic, racial and sexual orientations are riddled with their own unique complexities and potential triggers. I don’t pretend to know the answers, but what I think is paramount is that the discussion is started and perhaps spearheaded by our youth.” When asked why he thought the youth of today were so uninformed about HIV, David replied, “I think we live in a society that’s terrified to tell the truth or to cause unease or to potentially offend. So we place the blame on schools, we place the blame on parents; we place the blame on rock ‘n’ roll. We’ve strayed so far from an inclusive and supportive place for the human mind, body and spirit to thrive and are immersed in our individuality. The problem is that the youth infection rate is rapidly rising. The education and message driven campaigns are either absent or largely not effective. There are many individuals and organizations doing incredible work and we need to continue to support them. It’s also time we give youth the voice they deserve and listen to the remedies they suggest.”
Austin Head, a DJ/entertainer/musician appearing in Positive Youth, says he was prompted to participate in the documentary because of the world’s ignorance on the subject of HIV, especially young people. “The director of a local youth group told me that they have 16 year-olds coming in and testing positive. Their youngest so far was 15, and when he found out his reply was, “Was it something I ate?” Head, who was less open about his HIV status before Positive Youth now seems to be on a soapbox and is using his visibility to help get the word out. He has created a website called PositivelyFrisky.com, a social network for people that are HIV positive. “It’s a place on the web where they can find a safe, stigma free community, stay updated on HIV advancements and meet others with shared life experiences.” While Head hopes that Positive Youth will help educate the youth his campaign doesn’t stop there. “My hope and mission is stopping this severe oversight and injustice in the education of our youths. We must bring to light the advances we have made with HIV, show that life does not end when diagnosed and update all those who may still live in fear or ignorance of this affliction - that this is not something to be afraid of or ignore, but to conquer! I was not even born when HIV was discovered and yet, today, many people under 30 are wholly uninformed about HIV.”
When those interviewed were asked for advice to share, the unanimous answer was prevention. “Use protection to prevent all diseases,” stated Dr. Santiago. “Hep C can be transmitted sexually. HIV and Hep C – together are the number one cause of liver failure.” HIV/AIDS is still here and the issue should not be ignored. The miracle drug is still a myth even though symptoms are controlled with fewer pills today. While Richard Burton Jr. admitted to taking 17 pills a day, Dr. Santiago revealed that some of his patients take only one pill a day but that pill is expensive. “The one pill costs $2,500 per day,” says Dr. Santiago. While medical breakthroughs are improving HIV/AIDS medications, there still is no cure. BBC News reported this week that a panel of US health experts is now backing a drug called Truvada, which will prevent HIV infection in healthy people. This pill, which will also be expensive, is not yet on the market. Austin Head, whose documentary Positive Youth makes its television broadcast premiere on LogoTV on May 19 at 8 p.m., had the best advice to share. Both Positive Youth and PositivelyFrisky.com are small steps toward the change we need to make in the HIV education and prevention efforts. We have the tools to turn HIV around and stop it dead in its tracks. Unfortunately, with the estimated 1 million people in the US who have HIV, 20% don’t even know. And, by the way, 30% of those million are heterosexual. This affliction affects everyone - not just the gay community.” Austin went on to share advice from his friend Mitch. “Know your status, but also act as though everyone is positive by engaging in responsible sexual activity, and you will drastically reduce your risk of contracting any STD, let alone HIV.”
KEY STEPS TO GETTING PROPER HIV TREATMENT IN MIAMI:
Contact Care Resource and request that they assign you a case manager to assist you with treatment
3510 Biscayne Boulevard Miami, Florida 33137. 305.576.1234
If Care Resource is not able to assist you with treatment contact the Ryan White Foundation and request they assign you a case manager to assist you with treatment Office of Grants Coordination Ryan White Program
111 NW 1st Street, 19th Floor Miami, Florida 33128. 305.375.4742
Walgreens also has a special program to assist you with treatment.
Doctor’s Office That Provides Very Good Treatment at Reasonable Prices in Miami Beach: Wohlfeiler, Piperato & Associates www.wpamedical.com 305.538.1400. 1613 Alton Road, Miami Beach, FL 33139
The following centers offer services to people with HIV/AIDS who live in Miami-Dade County:
Acción: 305.672.1704
Body Positive: 305.576.1111
Cure Aids Now: 305.375.0400
HRS: 305.377.5022
Health Crisis Network: 305.751.7751
HAPMO: 305.374.8422
HOPWA (OCS): 305.795.1562
Legal Services of Miami: 305.576.0080
Lesbian/Gay/Bisexual Center: 305.531.3666
Lock Towns (moving): 305.623.0590
Miami Heart Institute (Spec. Imm. Unit): 305.674.3147
P.E.T. Center: 305.538.0525
PWAC: 305.573.6010
Planned Parenthood: 305.441.2022
S.H.E. Center for Women: 305.895.5555
Veterans Administration (Spec. Imm. Clinic): 305.324.3267
Village South: 305.573.3784
DEALING WITH HIV-RELATED EXCESS ABDOMINAL FAT
EGRIFTA® is a new medication approved to help HIV-infect ed patients reduce their excess abdominal fat from the disease.
1) What are the benefits of EGRIFTA®?
EGRIFTA® (tesamorelin for injection) is an injectable prescription medicine to reduce the excess abdominal fat in HIV-infected patients with lipodystrophy. It was approved by the FDA in November 2010 and was made available to patients in January 2011.
2) Is EGRIFTA® the only medication on the market that reduces HIV-related excess belly fat?
Yes, EGRIFTA® is the first and only treatment indicated to reduce excess abdominal fat in HIV-infected patients with lipodystrophy
3) Are there any major side effects associated with EGRIFTA®?
For full-prescribing information including side effects, you should visit www.egrifta.com/Patients/AboutEgrifta.aspx
4) What’s been the success rate of patients taking EGRIFTA®?
In two separate clinical trials, at six months, EGRIFTA® reduced HIV-related excess belly fat by an average of 18% in the first trial, and by an average of 14% in the second. This reduction in visceral adipose tissue (VAT) showed an approximately 1-inch reduction in waist size. On average, patients on EGRIFTA® did not lose weight. Like HIV, HIV-related excess belly fat is a chronic condition, so people who used EGRIFTA® continuously for 1 year maintained their results over this time period. People who stopped using EGRIFTA® after 6 months had VAT come back. In clinical trials of EGRIFTA®, a greater percentage of people who took EGRIFTA® reported an improvement in belly appearance distress than people who did not take EGRIFTA®.
5) Is there any assistance available for patients who would like to take EGRIFTA®?
With the availability of EGRIFTA®, EMD Serono launched both a co-pay and patient assistance program, in addition to the AXIS Center which provides dedicated reimbursement, teaching and adherence support for patients on EGRIFTA®. If you have been prescribed EGRIFTA® and have questions about product support, you can call the AXIS Center toll-free at 877.714.2947.
By James Cubby
WIRED
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