National Men’s HIV/AIDS Awareness Day

HIV.gov Shares Communication Tools for Gay

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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.

House and the Administration Begin to Show Their Hands

February 23, 2017

House Republicans Unveil a Health Care “Policy Menu”; Trump Department of Health and Human Services Proposes First Major Health Care Regulation

 

Although there is still no specific ACA repeal and replace proposal from the hill, both Congressional Republicans and the Trump Administration released documents last week articulating their approach to replacing the ACA and addressing concerns with the Marketplaces in the meantime. Congressional Republicans released a Health Care Policy Brief that is intended to serve as a menu of potential elements for a forthcoming ACA replacement bill. This Brief includes elements that have been found in previous ACA replacement proposals and that present concerns for access to care. Further, the Department of Health and Human Services (HHS) released a proposed rule entitled “Patient Protection and Affordable Care Act; Market Stabilization” (proposed rule), which is intended to help stabilize the Marketplaces until an ACA replacement is completed. Unfortunately, some of its changes may limit access to care for vulnerable individuals and make the Marketplaces less friendly to those living with chronic illnesses and disabilities. Advocates should be sure to understand both documents as well as send comments on the proposed rule to HHS by March 7, 2017.

Advocates Should:

1. Review the Health Care Policy Brief released by House Republicans last week to better understand which ideas are popular among Congressional Republicans and likely to make it into any ACA repeal and replace proposal.

2. Understand the proposed Market Stabilization regulation released by the Department of Health and Human Services and how it will impact access to care in the 2018 qualified health plans.

3. Submit comments on the proposed rule to HHS urging them to consider the impact the proposed regulations will have on access to care for vulnerable individuals.

House Republicans Unveil Health Care Policy Brief

On February 16, 2017, after a closed-door meeting, House Republicans unveiled a policy brief and resource document to explain major elements of their plan to repeal and replace key programs and protections of the ACA. House Leadership is terming this strategy “repeal plus.” The policy brief should not be considered an actual legislative proposal but rather a “menu” of replacement ideas such as tax credits for purchasing health care, health savings accounts, and high risk pools. Part of the intention of this document is to encourage Congressional Republicans, who have found it difficult to coalesce around a health care policy strategy, to find consensus on these issues. Unfortunately, many of the components of this “repeal plus” strategy would curb access to care for vulnerable individuals, including those living with chronic illnesses and disabilities.

 

When The HIV Community Speaks, Congress Better Learn to Listen

 

If the Republican majority in Congress, emboldened by its control of both chambers and the White House, thought it would be easy to roll back health reform and other progressive gains, they have begun to learn a lesson taught to Obama early on, that it is easier to articulate hope than it is to affect change. Over the first few weeks of Mr. Trump’s presidency, a massive and in many ways spontaneous resistance movement has formed all across the country, with millions of people taking to the streets to express their unwillingness to tolerate a White House and a Congress that pursues policies that are anti-woman, anti-immigrant, anti-Muslim, and would turn our social safety net to tatters.

One of the policies that has received some of the most vocal and passionate opposition has been the repeal and as-yet-unspecified replacement of the Affordable Care Act Repealing the ACA is a policy goal that served as the Republican Party’s white whale under the Obama administration, but one which their rhetoric and desire to implement have lagged in recent weeks. The lack of enthusiasm to promptly repeal the ACA is due to congressional Republican’s inability to design a replacement plan that doesn’t strip 18 million Americans of their health insurance in a year’s time and, perhaps more importantly, the fear of the collective outrage of millions of Americans should their health care be taken from them.

Over the past few weeks, numerous stories have been circling around both traditional and social media, showing Representatives going to extreme measures to avoid the wrath of a public that is rightfully incensed by plans to block grant Medicaid and tear apart the ACA with no concrete plans on how to sufficiently replace it. Whether it’s sneaking out of an event via a side exit or simply refusing to engage in town halls due to the anger of their constituents, members of Congress are clearly unnerved by the breadth and the intensity of the protests that have greeted them in their home districts. In fact, House Republicans were so shaken by the backlash against the prospect of ACA repeal that they convened a closed-door meeting this past Tuesday to discuss how to “protect themselves” from protesters.

It may not feel like it at times, but the power of collective resistance and protest is proving unparalleled in affecting change. If we are to save the ACA, or at least ensure that its most vital  benefits survive in a replacement plan, people living with HIV and those who advocate alongside them are going to have to engage in sustained, vocal opposition to any politician who tries to snatch our health care from us. This means suiting up and showing up to town halls and rallies, even when we don’t feel like going. It means calling your members of Congress at their offices and refusing to take no for an answer when you’re told a line is busy or a mailbox is full. The HIV community’s opposition to the destruction of the ACA must be unrelenting because the only way our elected officials will act in our best interest is if they are provided with no alternative.

Yes, changing the will of Congress may seem daunting, but each individual action on the road from where we are to where we aim to be is one step closer. One of the first steps you can take is to commit to meeting with your members of Congress and letting them know the repeal of the ACA is unacceptable. For the week beginning February 20, both the Senate and the House will be out of session and in their home districts and states. Many of them will be hosting town halls or have open hours for visiting and we must make sure that our presence is acutely felt. It is important to remember that they are beholden to us and that the amount of power they wield is indirectly proportional to degree to which we are politically engaged.

If you click here, you will find a substantial, but by no means comprehensive spreadsheet that lists the office hours and scheduled events for many members of Congress in their home districts and states in the near future. Use this list and any other resources you can find to plan an action during Presidents’ Day weekend and the days that follow. Make sure that, whether it’s in person or over the phone, your members of Congress are incapable of ignoring the needs of people living with HIV and all Americans living with chronic diseases.

Question them.
Tell your story.

Share your concerns and ensure that your voice is heard and that the provision of quality health care is nonnegotiable if they want to keep their job for long. And, if you want to continue with your HIV advocacy after the actions around Presidents’ Day, there’s no better way to do so than to register for AIDSWatch, the largest annual HIV/AIDS advocacy event in America. This year, AIDSWatch is more important than ever and we need your help more than ever if we’re going to make Congress recognize the possibility and importance of ending the AIDS epidemic and protecting the policies that allow people living with HIV to get access to quality, affordable care.

Posted By: AIDS United, Policy Department – Thursday, February 09, 2017

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