National Men’s HIV/AIDS Awareness Day

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Florida Phasing Out Project AIDS Care, Other Medicaid Waivers

Thousands of Floridians living with AIDS could be losing financial assistance they say is essential to living a normal life, and some AIDS groups are worried the state won’t carry through on its promises.

On a recent Tuesday morning, Brandi Geoit sits at a conference table at the West Coast Aids Foundation headquarters. Across from her in the small New Port Richey office with butter-yellow walls is Dwight Pollard, a 61-year-old man living with AIDS.

Geoit tells him a new Florida law means patients like him could lose some of the financial help they’re getting through Medicaid.

“We’re not sure if you would keep your Medicaid because you’re still pending for your social security. And you haven’t qualified for Medicare yet because you’re still not old enough,” Geoit said.

Pollard no longer works, and depends on a special Medicaid waiver to cover his health care costs. Medication alone can cost $15,000 a month.

His partner, Ed Glorius, was sitting next to Pollard as he heard the news.

“It just doesn’t make sense,” Glorius said. “It doesn’t make sense to put people’s lives in turmoil. We’re better off than most and I’m freaking out. I’m waking up first thing in the morning thinking about this every day.”

Pollard is one of about 8,000 Floridians with AIDS who get help paying for doctor visits, medications and various home health services through this Medicaid waiver fund, which is called Project AIDS Care. Last month, Gov. Rick Scott signed a bill formally eliminating this waiver for AIDS, along with waivers for cystic fibrosis, developmental disabilities and elder care.

Florida’s Agency for Health Care Administration said while the waiver is going away, AIDS patients in Florida will not see a loss or gap in services. The agency declined repeated requests for interviews, but issued a written statement, explaining transition into a Medicaid Managed Medical Assistance plan.

“We will continue to provide the same services through the same providers for these individuals. The PAC (Project AIDS Care) waiver is essentially a waiver that expanded Medicaid eligibility to those diagnosed with HIV/AIDS and allowed the recipients to access needed medical services (e.g., physician services) and drugs. Given the advances in pharmaceuticals available to treat HIV/AIDS, most PAC recipients in the waiver only need those medical services and case management. With this transition, their eligibility will be maintained and they will continue to have access to the medical services, drugs and case management under the MMA waiver through the health plans. They will see no reduction in services and will be able to continue to see the medical professional they always have.”

The agency said patients will go into the Medicaid Long Term Care program starting this month. Everyone will be transitioned into it by Jan. 1, 2018.

But Geoit estimates 90 percent of her clients will not meet the requirements for long term care, which normally applies to people needing round the clock nursing.

She said her clients will definitely lose certain services that Medicaid doesn’t cover. Massages for those with neuropathy? Gone. Pest control? Gone. And services that are currently covered – like delivered meals, adult diapers and wheelchair ramps – could be lost, too.

So, she’s asked the state to clarify how it’s now different.

“When we asked them, they said, ‘Don’t worry. Reassure your client that they’ll be taken care of.’ And when we asked them point-blank what happened, you know, we were under the impression that a single adult still does not qualify for Medicaid. Has this changed? And they ended the conference call,” Geoit said.

Her program – a non-profit – exists only to manage the Project Aids Care waiver money for 325 clients in seven counties including Pasco, Pinellas and Hillsborough. With the new law, Geoit said her foundation will shut its doors by the end of the year.

For Dwight Pollard and his partner, the State Agency for Health Care Administration’s lack of answers is a concern.

“You don’t need the stress of how you’re going to pay or how you’re going to do this,” Pollard said.

But that’s his reality. And Pollard said until the state agency can give clear answers, he’ll keep searching for other programs that can help pay for his life saving medications.

2018 United States Conference on AIDS

 

 

June 12th has been designated as Orlando United Day.  On this day, we remember the 49 angels who were killed at the Pulse nightclub in Orlando. This was a deliberate attack on the LGBT community that must never be forgotten.

To show our support for Orlando and the LGBT community, NMAC is pleased to announce that we will hold the 2018 United States Conference on AIDS in Orlando on September 6-9, 2018.  Please save the date.

The 2018 meeting will highlight the contributions made by the LGBT community to our efforts in ending the epidemic.  Our community has suffered so many losses and we must stand together.

The 49 beautiful portraits in this e-newsletter were created by 49 different artists across the country.  Each portrait portrays someone who was killed in the Pulse shootings.  They are all on exhibit at the Terrace Gallery at Orlando City Hall from May 1 – June 14, 2017.

Yours in the struggle,

Board & Staff of NMAC
Stronger Together!

Resilience



By Fernando De Hoyos · NMAC Treatment Coordinator

Every year we come together on this day to honor the lives and struggles of Long-Term Survivors of HIV and AIDS. For me, everyone who was old enough to remember the early days of the epidemic is a long-term survivor regardless of HIV status. Countless allies living without the virus have been side by side with us along this journey. It was a time like no other in US history. June 5th was chosen because on this day, in 1981, the Center for Disease Control (CDC) first announced the “mysterious cancer” that was killing gay men around the country. Therefore, this day is a national day of remembrance and sharing our stories of resilience and survival, to document them for posterity.

I have told my story many times, so I want to talk about this year’s theme: “Resilience”. As a long-term survivor, I know resilience very well. Resilience is the ability to cope with adversity and to adapt well to tragedies, traumas, threats or severe stress. Being resilient does not mean not feeling discomfort, emotional pain, or difficulty in adversity. However, people living with HIV are usually able to overcome their diagnosis and adapt well over time. Resilience involves a series of behaviors and ways of thinking that anyone can learn and develop. I believe resilient people have three main characteristics: Know how to accept reality as it is; Have a deep belief that life makes sense; And have an unwavering ability to adapt to almost anything, often making the best out of it.

Resilient people usually possess a good dosage of realistic optimism. A positive vision of the future without being carried away by unreality or fantasies. Our perceptions and thoughts influence the way we deal with stress and adversity. We don’t run away from problems but face them head on and seek creative and innovative solutions. It involves seeing problems as challenges that we can overcome and not as terrible threats. Challenges are opportunities for learning and growing. I think blessings sometimes come in ugly packages, but what is inside could be the gift of a lifetime. “We are shaped by our thoughts; we become what we think.”– Buddha.

Which takes me to Gratefulness. Gratitude is a major contributor to resilience. When we focus on what we have, we realize that what we might be missing is not as important. It allows us to focus on life from a place of abundance versus a place of deficit. Gratitude improves physical and psychological health. Studies have shown that people living with HIV who practice gratefulness are more likely to take care of their heath, exercise and have good medication adherence. Developing an attitude of gratitude is one of the simplest ways to improve quality of life and sense of wellbeing.

Life is a blessing, with all the good and the not so good. The notion that whatever our journey might be, is unique and wonderful as it is. This is what makes life worth living. We just must be present to enjoy it, and the present moment is a gift, that’s why is called The Present. Please join us in raising awareness about HIV Long-Term Survivors contributions and accomplishments, as well as needs, issues, and journeys.

Yours in the Struggle,

AIDS United Responds to Fiscal Year 2017 Omnibus Appropriations Bil

 

AIDS United acknowledges that the Fiscal Year 2017 omnibus appropriations bill, released last night, provides continuity of HIV funding for most domestic programs. This is an important development for maintaining our progress towards the national goals and priorities of reducing new HIV infections, increasing access to care and improving health outcomes for people living with HIV, and reducing HIV-related health disparities.

While most HIV programs will see level funding in the budget, AIDS United is concerned that a $4 million cut to Ryan White HIV/AIDS Program Part C clinical providers and a $5 million cut affecting the budget to fight sexually transmitted infections will diminish our response to HIV and health care, particularly given the increasing cases of sexually transmitted infections, such as syphilis, among men who have sex with men.

“Knowing that Congress plans to keep funding intact for most HIV efforts is reassuring, but we urge Congress to also ensure that Part C clinical providers and our response to sexually transmitted infections are fully funded,” said AIDS United President & CEO Jesse Milan, Jr.

AIDS United is particularly appreciative that Congress listened to the voices of people living with and affected by HIV in increasing funding for the Housing Opportunities for People With AIDS (HOPWA) program by $21 million. “Housing is fundamental to ensuring that people living with HIV live longer and healthier lives and we thank Congress for recognizing the importance of this program by securing its current stability,” said Milan.


About AIDS United: AIDS United’s mission is to end the AIDS epidemic in the U.S., through strategic grant-making, capacity building, formative research and policy. AIDS United works to ensure access to life-saving HIV/AIDS care and prevention services and to advance sound HIV/AIDS-related policy for U.S. populations and communities most impacted by the epidemic. To date, our strategic grant-making initiatives have directly funded more than $104 million to local communities, and have leveraged more than $117 million in additional investments for programs that include, but are not limited to HIV prevention, access to care, capacity building, harm reduction and advocacy. aidsunited.org

Upcoming PMBSGN Support Group Meeting

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Top 10 Questions About Living With HIV

 

By

Joel Gallant, MD, MPH

 

1. What’s my prognosis?

Your prognosis is excellent, especially if you’re diagnosed early, get started on medications right away, and take your medication daily. Under those circumstances, your life expectancy can be the same as it would have been without HIV. Even people who are diagnosed or treated after their immune system has been weakened can still do very well on treatment. The keys to a long and healthy life with HIV are getting good medical care and adhering to therapy.

2. How does HIV make you sick?

Untreated HIV infection causes a steady decline in CD4 cells, a type of white blood cell that protects you against certain infections and cancers. As the CD4 count falls, your risk of these complications increases. “Opportunistic infections” (OIs) are infections that don’t happen to people with healthy immune systems, but can occur in people with low CD4 counts (usually less than 200 cells/mm3). And a weakened immune system (“immunosuppression”) isn’t the only problem caused by HIV. Even at high CD4 counts, HIV infection causes chronic inflammation and activation of the immune system, which may increase the risk of some long-term complications such as heart attack, dementia, osteoporosis, and cancers. Fortunately, HIV treatment restores CD4 cells and reduces inflammation and immune activation, preventing most complications.

3. What are the most important lab tests to follow?

The CD4 count measures the health of your immune system. It predicts your risk of complications and determines the urgency of treatment. A count above 500 cells/mm3 is normal. If your count is below 200 cells/mm3, you’re at risk of developing OIs and are considered to have AIDS. The viral load measures the amount of virus in the blood. It’s the best measure of how well treatment is working. Effective treatment should reduce the viral load to undetectable levels (usually less than 20 copies/mL) within a few months, and that’s where it should stay.There are many other recommended lab tests that assess your general health and monitor the effects of treatment. Most people with HIV get lab work every 3-6 months.

4. How do I prevent OIs and cancers?

The best way to prevent these complications is to keep your CD4 count high and your viral load undetectable on treatment. But if you’ve just been diagnosed and your CD4 count is low, your doctor may put you on OI “prophylaxis”: medications to prevent common OIs. Prophylaxis is usually temporary; it can be stopped after you’ve responded to treatment.

There are no medications to prevent cancer, but it’s important to get the recommended screening tests. For colon cancer, breast cancer, and prostate cancer, the recommendations are the same as for HIV-negative people. Cervical and anal cancer, caused by human papillomavirus (HPV), can be more aggressive in people with HIV, and the screening recommendations (using cervical and anal Pap smears) are different. Young people should get the HPV vaccine to prevent infection with this cancer-causing virus.

5. How do I avoiding infecting someone else?

Maintaining an undetectable viral load on treatment is the best form of prevention. People with undetectable viral loads don’t transmit HIV infection. Of course you don’t get your viral load measured every day, so you may want to take additional precautions, especially if you’re recently started treatment or if your viral load hasn’t been suppressed for very long. Wearing condoms provides added protection, especially for the highest risk activities (anal or vaginal intercourse with the HIV-positive partner “on top”). HIV-negative partners can also choose to take pre-exposure prophylaxis (PrEP), taking a medication called Truvada daily to prevent infection

 

6. What else should I be doing to protect my health?

 

Since you’re unlikely to die of AIDS, your goal should be to live a long, healthy life and then die of old age. For the most part, that means the same thing for you as it would for anyone else: exercise regularly, don’t smoke, eat a healthy diet, avoid drug use and excessive alcohol consumption, and get the recommended vaccinations and screening tests. There are a few recommendations that are different for people with HIV, but for the most part, a healthy lifestyle is a healthy lifestyle. There are no special diets you need to follow if you have HIV, and unless your CD4 count is low, there are no foods that having HIV requires you to avoid. In most communities, drinking tap water is fine. If you eat a healthy diet, you don’t need to take vitamins or supplements; the one exception might be vitamin D, a vitamin that most people seem to be deficient in these days. Since people with HIV are at greater risk of osteoporosis, maintaining normal vitamin D levels is probably a good idea. Ask your doctor before taking other vitamins and supplements, as some can interact with HIV medications

 

7.  Are my medications toxic?

 

Many of the earlier HIV medications were difficult, sometimes causing side effects such as nausea, diarrhea, anemia, fatigue and toxicities (damage to the body) like liver problems, high cholesterol, diabetes, heart disease, and/or body shape changes. Fortunately, that’s not the case with the medications we use today, which is one of the reasons why we now recommend treatment for everyone. If they occur at all, side effects are usually mild and temporary. There are few long-term toxicities, and they’re no longer inevitable.

 

Still, it’s important to be monitored regularly while you’re on treatment, both to make sure it’s working and to make sure it’s not causing problems. When side effects or toxicity occur, you can easily switch medications provided your viral load is suppressed. Stopping therapy is never a good idea. It allows your viral load to rebound, your CD4 count to fall, and can lead to drug resistance. If you don’t like the regimen you’re on, don’t stop it; talk to your provider about making a change.

 

8.  Will my virus become resistant to my medications?

 

Not if you take them. Resistance occurs when the virus mutates in a way that allows it to replicate (reproduce) despite the presence of drugs. The virus can’t mutate unless it’s replicating, and it can’t do that if it’s constantly suppressed by therapy. If you stop taking your medications or miss multiple doses, the virus can replicate. If there is still some drug in your blood, virus with mutations that make it resistant to those drugs can be selected and become the predominant strain. When that happens, you’ll need a resistance test to find out which drugs will still be effective, and then you’ll need to change your regimen.

 

It’s possible to be infected by a virus that’s already resistant to drugs, which is why a baseline resistance test is now recommended for everyone at the time of diagnosis. When transmitted resistance is present, it’s important to customize your drug regimen based on the test results, ensuring that you’ll be on a fully active drug combination.

 

9. Can I still have children?

 

Yes, you can. If you’re a woman with HIV, taking medications during pregnancy will prevent transmission to the baby, as long as your viral load is undetectable at the time of delivery. If you’re a man, your HIV infection doesn’t directly affect the infant, who can only be infected by the mother. Your priority should be not infecting your partner if she’s HIV-negative. It’s critical that you have an undetectable viral load on treatment before you try to conceive. Some women with HIV-positive partners may also choose to take pre-exposure prophylaxis (PrEP) for added protection.

 

10.  When will there be a cure?

 

Curing HIV will be a challenge. Until very recently, there was no cure for any viral disease. They either ran their course and resolved on their own (the common cold), were preventable by vaccination (measles), or stayed with you for life (herpes). Now that we can cure hepatitis C, that rule has been broken, but HIV is far more complicated because of “latency”: the DNA of the virus gets inserted into human DNA in cells that live for a very long time. As a result, cure is not a matter of killing virus or of stopping replication, which we can do now, but of eliminating all viral DNA from latently infected cells. Scientists are looking at ways to do that by “activating” (waking up) the latent cells, by genetically modifying those cells so they can’t be infected, or by removing the inserted viral DNA from the human DNA. We will probably achieve a cure someday, but I don’t think it’s just around the corner.

 

In the meantime, we’ve made truly remarkable progress with treatment. There aren’t many chronic diseases that we can treat so effectively with a single, well-tolerated pill per day. When a cure comes, it probably won’t be as simple or non-toxic as treatment, and it might even be less of a sure thing. It wouldn’t surprise me if some people chose to stick with lifelong therapy over cure… but I hope I’m wrong.