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,

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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

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.

New Administration, Old Approach: Trump advocates Medicaid Block Grants & ACA Repeal

 

As the shifting legislative landscape of President Trump’s first 100 days continues, two major developments emerged in the health care reform world: that the Trump administration plans to block grant the Medicaid program and that President Trump signed an initial executive order weakening the ACA.

 

From its inception in 1965 under President Lyndon Johnson until the present day, Medicaid has served as a public insurance program for low-income individuals, families, and people with certain disabilities. Unlike Medicare, which was created at the same time and is both federally funded and administered, Medicaid is a federal-state partnership program in which each individual state administers their own Medicaid program using a mixture of state and federal funds, provided that certain services and populations are covered. For the entirety of its existence, Medicaid has been an entitlement program, which means that the government is required to provide coverage for anyone who meets the eligibility rules for enrollment. This means that the amount of money being spent on a state’s Medicaid program fluctuates from year-to-year based on how many people qualify for coverage.

 

Every Republican President since Ronald Reagan has tried, and so far failed, to turn Medicaid from an entitlement program into a discretionary block grant program. Block granting Medicaid would mean the federal government would present states with a predetermined amount of money to serve their low-income and disabled residents at the beginning of each year. Most plans to block grant Medicaid would determine the amount of funding based on previous state and federal Medicaid spending in a given state, with slight changes each year to account for inflation. The states would then be allowed to determine exactly how to spend that money with many fewer requirements than in the current system. This means that if there were a recession, an unexpected disaster, disease outbreak or if general health care costs continued to rise faster than inflation, state governments would not be given extra federal funds.

 

In such a situation, states would address the health care needs of their low income and disabled residents through a variety of means, but most would reduce or eliminate covered services, restrict access to the program, or introduce higher cost-sharing mechanisms. Taken together, this would adversely affect the health and wellbeing of those in need of care. In a best case scenario, states would take on the excess costs themselves. However, this might prove difficult since many states are required to balance their budgets which might require tax increases or additional sources of revenue to meet these increased Medicaid costs. As a result, many states would choose to avoid added costs by changing the Medicaid eligibility criteria, reducing Medicaid benefits, and simply not providing care to people who are eligible. According to an analysis of a previous Republican proposal from 2012, the block granting of Medicaid could wind up dropping anywhere between 14.3 million and 20.5 million people from care.

 

It is nearly impossible to overstate how devastating Medicaid block granting would be for people living with or at risk of contracting HIV. Right now, Medicaid is the largest source of insurance coverage for people living with HIV, covering more than 40% of people with HIV who are in care. At the same time, Medicaid accounts for 30% of all federal HIV spending and when combined with state Medicaid spending, represents the 2nd biggest source of public HIV financing, trailing only Medicare. Under block grant funding, people living with HIV could bear some of the largest burdens of all impacted populations, because state governments may choose benefit designs that disproportionately affect pricey HIV medications. Given the amount of stigma regarding people living with HIV, LGBT people, and lower income populations, it is possible that some states would choose to do so. Although it may sound unlikely that a state government would discriminate against the provision of medical treatment for certain populations, it has been suggested in the past. For example homophobic legislators in Tennessee openly questioned providing funds to treat people living with AIDS due to their “bizarre lifestyle.” AIDS United strongly opposes block granting Medicaid and we urge readers to call their legislators with that message.

 

President Trump’s executive order intended to weaken the ACA may be more important for what it suggests than for what it actually accomplishes. The executive order directs federal agencies to use their current regulatory authority to “minimize the economic burden” and minimize or remove “any provision…that would impose a fiscal burden on any State, or a cost, fee, tax, penalty, or regulatory burden on an individual.” The order would also grant waivers to states that undercut the cost of consumer protections, encourage the sale of health insurance across state lines, and encourages agencies to use discretion to avoid expanding the ACA.

 

By himself, Mr. Trump doesn’t have the power to repeal or directly impede the implementation of the ACA. However, he can instruct the employees of federal agencies to begin chipping away at the law’s effectiveness. For example, the Trump administration can’t formally strike down the ACA’s individual mandate that all Americans be insured, but he can instruct the IRS to simply not fine anyone who doesn’t abide by the mandate, rendering it useless. Similarly, the executive order instructs the Department of Health and Human Services (HHS) to provide states with considerable leeway when it comes to the implementation of their health care programs and encourages HHS to accept waivers from states that would help them get around ACA regulations that they find overly restrictive.

 

On Thursday, the administration reportedly took another step to undermine the ACA. White House officials ordered the Department of Health and Human Services to halt all advertising and outreach efforts encouraging enrollment in ACA health plans purchased on the Healthcare.govmarketplace during the last days of the 2017 open enrollment period. This is significant because in previous ACA open enrollment periods, the final days were among the heaviest for signing up for health coverage. The White House action does not affect people’s ability to sign-up for coverage on the website; open enrollment ends Tuesday, Jan. 31.

 

AIDS United believes that the ACA must remain in place and that no effort to make changes, including this executive order, should attempt to repeal the law without an immediate and effective replacement in place. AIDS United will continue to provide concise analysis of the what’s happening in Washington regarding health care reform and why it should matter to people living with HIV.

 

Posted By: AIDS United, Policy Department – Friday, January 27, 2017
Search Tags: Affordable Care Act , HIV Policy

In Congress, Obamacare Replacement Plans Start To Emerge

 

Just twenty-five days into the 115th Congress, the Republican congressional majority has made significant steps to make good on campaign promises to repeal the ACA and setup President Trump for swift action on his other top priorities. Republicans kicked off a policy retreat in Philadelphia Wednesday that extends through Friday evening where they hope to hash out how to repeal and replace Obamacare.
While Republicans have had the last six years, and five-dozen attempts to overturn the ACA and plot a replacement, no clear consensus has risen on what to do following repeal. Adding to the uncertainty of how they might repeal and replace Obama’s signature law, is the assertion by President Trump that he will send his own plan to Congress, once his Health and Human Services (HHS) Secretary nominee, Tom Price is confirmed. The notion of the White House sending legislation to Congress is unnerving for many lawmakers and calls into question the separation of powers. Senator Rand Paul M.D. (R-KY), who introduced The Obamacare Replacement Act (S.222) this week, said in a statement that, “Sometimes you get ideas from the White House,” which underscores the atypical nature of President Trumps desired path toward repeal.

The Paul Replacement 

Sen. Paul’s bill has several provisions including an immediate repeal of the individual and employer mandates, the essential health benefits requirement, and other insurance mandates. Further the bill would allow unlimited deposits into Health Savings Accounts and broaden options for using those funds; allow the purchasing of insurance across state lines; and create voluntary associations for insurance pooling.

Cassidy-Collins replacement 

Sens. Bill Cassidy (R-LA) and Susan Collins (R-ME) held a press conference Monday to propose three options states could consider moving forward with health care coverage. States could either keep the Affordable Care Act (ACA) but with reduced federal funding for subsidies, switch to a different system to purchase insurance coverage, again with reduced subsidies , or go forward with an alternate plan that does not include federal assistance. The Cassidy-Collins proposal is in direct contrast to plans discussed by House and Senate leadership, which would not let the ACA continue in any form. Cassidy notes that this proposal serves as a middle-way approach that could potentially bridge Democrats’ and Republicans’ concerns. However, the Cassidy-Collins one-page compromise still needs legislative language.

Cassidy noted:
“At some point in this process, we will need a bill that can get to 60 votes. Now you can say to a blue-state senator who is invested in supporting Obamacare, ‘You can keep it, but why force it on us?’” Collins, affirms saying, “I believe most states would embrace this option, which allows states to cover the uninsured by providing a standard plan that has a high-deductible, basic pharmaceutical coverage, some preventive care and free immunizations.”

The question is, what does the rest of Congress think?

Senate Minority Leader Chuck Schumer (D-NY) described the proposal as “an empty facade that would create chaos.” Schumer wasn’t the only Democrat that predicted insurmountable challenges in the Cassidy-Collins proposal. Democratic leadership call into question the idea of giving some states the option to dismantle the current health care law and replace it with something else or nothing at all, for that matter. Conversely, Republican leadership hasn’t publicly commented much on the generality of the bill. Furthermore, Republicans have persistently supported the dismantling of the current health care law’s taxes and fees.

Presidential Executive Order 

As one of his first actions last Friday, Trump signed an executive order intended to minimize the economic burden of the ACA, pending its repeal. The order allows the U.S. Department of Health and Human Services (HHS) and other federal agencies to use their existing powers “to the maximum extent permitted by law” to weaken the ACA. HHS and agencies such as the IRS “were given vast discretion over key parts of the law including the individual and employer mandates,” per Pro Health Care’s Brianna Ehley. What this could mean is that it is possible to stop the individual mandate from being enforced.

In addition to President Trump’s actions, there was a congressional hearing, at which Republican members sought to expose what they perceive to be a decrease in marketplace competition and affordability. The hearing examined the “Failures of Obamacare.” There was also a hearing on theACA Individual Mandate. The hearing on the Price Nomination for HHS Secretary was also a forum for Republican senators to air their ACA-related grievances.

As HIV advocates we remain vigilant in the changing landscape and continue to seek intelligence and influence the proposed changes to our health care systems. It is imperative that the ACA not be repealed without a replacement that protects the expanded access the law has brought. We must insure vulnerable population, including people living with or at risk for HIV, are provided the access to care they deserve.

Posted By: AIDS United, Policy Department – Friday, January 27, 2017

5 Things To Know About Rep. Tom Price’s Health 

Rep. Tom Price has introduced his own alternative to the Affordable Care Act four times. The legislation provides an idea of how he might lead the Department of Health And Human Services.

Andrew Harrer/Bloomberg via Getty Images

Georgia Rep. Tom Price has been a fierce critic of the Affordable Care Act and a leading advocate of repealing and replacing the 2010 health care law.

Price, an orthopedic surgeon from the suburbs of Atlanta, introduced his own legislation to repeal and replace Obamacare in the current Congress and the three previous sessions. Price’s plan, known as the Empowering Patients First Act, was the basis for a subsequent health care proposal unveiled by House Speaker Paul Ryan, with Price’s endorsement, in June.

Price’s major complaint about the ACA is that it puts the government in the middle of the doctor-patient relationship.

“They believe the government ought to be in control of health care,” Price said in June at the American Enterprise Institute event where Ryan unveiled theRepublican proposal to replace Obamacare. “We believe that patients and doctors should be in control of health care,” Price continued. “People have coverage, but they don’t have care.”

Now that President-elect Donald Trump has tapped Price to lead the Department of Health and Human Services, here are five key planks in his own health care proposal.

  1. Price’s plan offers fixed tax credits so people can buy their own insurance on the private market. The credit starts at $1,200 a year and rises with age, but isn’t adjusted for income. Everyone receives the same credit whether they are rich or poor. People on Medicaid, Medicare, the military health plan known as Tricare, or the Veterans Affairs’ health plan could opt instead for the tax credit to buy private insurance.
  2. Price advocates for expansion of health savings accounts, which allow people to save money before taxes to pay for health care. This includes allowing people who are covered by government health programs including Medicare and the VA to contribute to health savings accounts to pay for premiums and copayments. These proposals are included in Ryan’s plan.
  3. People with existing medical conditions couldn’t be denied coverage under Price’s plan as long as they had continuous insurance for 18 months prior to selecting a new policy. If they didn’t, then they could be denied coverage for that condition for up to 18 months after buying a new plan.
  4. The Price proposal limits the amount of money companies can deduct from their taxes for employee health insurance expenses. Companies can deduct up to $20,000 for a family health insurance plan and $8,000 for an individual. The goal is to discourage companies from offering overly generous insurance benefits to their workers. Ryan’s plan proposes a cap on the employer tax deduction but doesn’t specify the level of the cap.
  5. States would get federal money to create so-called high-risk pools under Price’s plan. These are government-run health plans for people with existing medical conditions who can’t get affordable health insurance on the private market. Critics say high-risk pools have been tried in as many as 34 states and largely failed because they were routinely underfunded.

Price has said he’s not wedded to his own ideas and is open to compromise, so the final proposal to replace Obamacare is likely to be a hybrid of his ideas and those hammered out with other Republican House members and presented as Ryan’s plan.

Still, with Price on track to be at the helm of HHS, he would be the one writing the rules to implement whatever legislation is eventually passed.

WAD 2016

Please see attachment concering our collaboration with IRCHD and IRCHAAN for the upcoming WAD 2016.

PLEASE RSVP ASAP!!!!

 

 

 

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