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!

AIDS United’s Statement on President Trump’s Budget for FY 2018

AIDS United is shocked by President Trump’s Fiscal Year 2018 budget request released today. It threatens to roll back the progress in the fight against the domestic HIV epidemic. Now more than ever we must maintain and strengthen our progress towards our 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.

The deep proposed cuts to domestic HIV and STD prevention cannot be reconciled with the goal of preventing new HIV transmissions and the rising rates of STDs. The proposed $59 million cut to the Ryan White HIV/AIDS Program, coupled with a fundamental restructuring of the Medicaid program capping federal spending for the first time to the tune of a $610 million funding reduction over the next decade, diminishes every community’s ability to deliver quality health care to people living with HIV by eliminating AIDS Education and Training Centers and Special Programs of National Significance (SPNS).

“AIDS Education and Training Centers (AETCs) are essential to the HIV care continuum and the success of the national goals and priorities to end the epidemic,” said AIDS United President & CEO Jesse Milan, Jr. “AETCs assure that providers know and apply the best standards of care for people living with and at risk for HIV.”

Further, AIDS United is particularly concerned that the President’s budget eliminates SPNS and reduces funding for Minority AIDS Initiative (MAI) programs. SPNS and MAI programs address the HIV epidemic by developing targeted, innovative approaches to reach chronically underserved people.

“Investment in targeted approaches are effective and save money, at a time when 1 in 2 and 1 in 4 Black and Latino gay and bisexual men respectively are at substantial risk for HIV infection in their lifetime. How can we reduce funding to programs that address these disparities? The President’s budget isn’t just a set of numbers, it’s a disturbing statement of values. Every voter must send their own message to Congress to express that they value the health of our people,” said Milan.

AIDS United urges Congress to reject the draconian cuts proposed in the President’s budget request and support funding for Medicaid, HIV programs, and STD prevention. Congress cannot idly allow the return of reduced, sequester discretionary spending caps for fiscal year 2018. These restrictive caps must be raised so that non-defense discretionary programs, which include HIV programs, can be adequately funded in fiscal year 2018. A bipartisan budget agreement that provides relief from the sequester spending caps while preserving parity between defense and non-defense discretionary programs must be achieved for 2018.

“The president’s budget would turn back the clock for years and years on progress to end the HIV epidemic. We call on Congress to keep the country moving forward,” said Milan.

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

Among the ideas proposed in the policy brief are:

Moving Subsidies to Reflect Age and Not Income. Although the plan is short on specifics, it would replace the ACA’s current tax subsidies for purchasing insurance on the exchanges with tax credits. Limited detail is provided regarding these tax credits except that they would be refundable (similar to the current subsidies) and would be age-rated. These tax credits, however, would not scale to reflect an individual’s income. This means that lower income individuals will receive the same amount of support as middle or upper class Americans. While this support may be enough to help higher income individuals, it will likely not be enough to provide meaningful access to care for a person who is unable to supplement the tax credit with his or her own income. This is especially alarming for access to care for individuals living with chronic illnesses and disabilities because lower income Americans tend to be sicker and more likely to be disabled than higher income individuals.

Encouraging Health Savings Accounts (HSAs). Republicans have long been proponents of HSAs, especially coupled with high deductible health plans, and the policy brief is no exception. The plan allows for individuals to contribute more to health savings accounts, which are tax free, and to deposit any tax credit funds left over after purchasing a health care plan, to their HSA. HSAs often do not work for lower income individuals, who cannot adequately fund such accounts. They also do not work for individuals with high anticipated health care costs, such as those living with certain chronic illnesses and disabilities, because their medical spending quickly outstrips any savings they can contribute to their HSA. While HSAs can allow higher income individuals with low medical costs to save, they should not be considered a good solution to access to care problems for vulnerable individuals.

Sharply Curtailing Federal Support of Medicaid. The policy brief calls for the federal government to limit its financial support of Medicaid. The plan calls for repealing the ACA’s Medicaid expansion. Additionally, it calls for the federal government to fund expansion enrollees at the basic Medicaid level, rather than at the 90% level currently promised by the ACA. This would force states to bear more of the cost of their expansion populations, which may lead states to limit their eligibility for Medicaid or end expansion altogether. The policy brief also gives states the choice of moving their Medicaid program to a block grant or per capita cap funding formula. Block grants would limit federal financial support of Medicaid programs, and likely force states to tighten enrollment requirements or cut benefits. The Congressional Budget Office determined that a similar block grant proposal would cut federal Medicaid spending by 35%.

Because the policy brief is so short, advocates interested in understanding these proposals in depth should review Speaker of the House Paul Ryan’s A Better Way” plan, which covers the same elements in greater depth. Although Congressional Republicans have yet to coalesce around a particular proposal, the policy brief is a good indication of which elements will likely be included in a “repeal and replace” bill. Advocates should make sure they understand the impact these elements, could have on vulnerable individuals.

Administration Proposes First Major Health Care Regulation Intended to Stabilize the 2018 Marketplaces

On February 15, 2017 the Department of Health and Human Services (HHS) released its first major health care regulation under new Secretary Tom Price. The purpose of this proposed rule is to stabilize the individual health insurance Marketplaces until Congress is able to repeal, replace, or repair the ACA. Unfortunately, however, many of the major components of the new regulation may have the opposite effect on the Marketplaces and actually curtail access to care.

The proposed new regulation would implement the following changes in the Marketplaces:

Shortening Open Enrollment for 2018: The proposed rule moves the end of the 2018 open enrollment period from January 31, 2018 to December 15, 2017. HHS promises that they will “conduct extensive outreach to ensure that all consumers are aware of this change.” Advocates should be sure to hold HHS accountable for this promise because

otherwise many consumers, who are used to much longer open enrollment periods from the past several years, may find themselves shut out of enrollment for 2018.

Tightening Special Enrollment Periods (SEPs): The ACA provides for SEPs to recognize that major life changes, such as loss of employer based coverage or the birth of a child, necessitate changes in health insurance coverage. Under President Obama, HHS was already working to fine tune SEPs, in response to insurer complaints, such as requiring documentation for certain SEPs and initiating a pilot program requiring verification for other SEPs. The proposed rule further tightens requirements to qualify for an SEP by: 1) requiring pre-enrollment verification of eligibility for all SEP categories as of June 2017 and expanding on the pre-enrollment verification program to cover about 650,000 individuals; 2) limiting the ability of enrollees to upgrade from one metal level (i.e. gold, silver, bronze) to another during a coverage year by using an SEP; 3) limiting eligibility for certain SEPs such as requiring at least one partner to have minimum essential coverage within the last 60 days prior to marriage for both spouses to qualify for a marriage SEP; and 4) limiting the use of the exception circumstances SEP (although more guidance on this issue will be forthcoming). Advocates should make sure that enrollment assisters and consumers are aware of the tightened restrictions around SEPs. Consumers should not assume that because they qualified for an SEP in the past that they will be able to do so in the coming years and should be strongly encouraged to obtain coverage during the open enrollment period whenever possible.

Establishing Continuous Coverage Requirements: The proposed regulation asks for input on establishing continuous coverage requirements, designed to discourage adverse selection. The ACA has generally relied on the individual mandate instead of a continuous coverage requirement to encourage healthy individuals to maintain coverage. This request for input likely reflects the popularity of continuous coverage requirements as an alternative to the individual mandate among the Administration and Congressional Republicans. Unfortunately, continuous coverage requirements disproportionately burden people living with chronic illnesses and disabilities because any lock out period can prevent them from accessing the care they need to manage their often life-long conditions. The proposed rule does not contain a specific continuous coverage proposal, suggesting that HHS is unsure of whether to proceed on this issue. Advocates should be very vocal on this issue, making it clear to the Administration that a requirement that burdens vulnerable individuals rather than spreading the responsibility among all Americans is unacceptable. Now is the best time to intervene to halt the implementation of continuous coverage requirements in the Marketplaces, before a proposal is fully fleshed out.

Undermining Guaranteed Availability: Under the current regulations and the ACA, consumers who fall behind on their premium payments cannot be terminated by insurers until the end of a three month grace period. During the first month of this grace period the insurer will pay claims as normal and in the second two months the insurer will pend claims until the individual catches up on payments. Under the ACA’s guaranteed availability provision, insurers must offer coverage to any consumer during open enrollment periods or appropriate special enrollment periods regardless of whether they owe the insurer for last year’s coverage so long as they are picking a different plan. This is intended to preserve access to care for many low income individuals who may fall behind on their premium payments. Under the proposed rule, however, an insurer would be able to attribute payments from a reenrolling consumer to last year’s debts and refuse to effectuate further coverage until outstanding premiums were paid. This change may prevent individuals from obtaining coverage because their plans will not begin until they can clear their debts from last year’s coverage. For those living with conditions that require continuous care and management to control properly, like diabetes or HIV, this change could result in a disruption of care.

Relaxing Actuarial Value (AV) Requirements: The ACA requires that each metal level of qualified health plans achieve a certain AV. AV is the percentage of the total cost of health care expenses of a standard population that are covered by the insurer using premiums rather than by the enrollee using cost sharing and deductibles. A higher AV protects people with high medical spending, such as those living with chronic illnesses and disabilities, by requiring insurers to spread the costs of treatment around their entire enrollment population rather than asking vulnerable individuals to pay large sums out of pocket. The ACA allows some variation in AV among plans of the same metal

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level. The proposed rule would allow for greater variation in AV among these plans, which would allow insurers to market qualified health plans with higher cost sharing but lower premiums on the Marketplaces. These plans would be attractive to healthy higher income consumers but would potentially dissuade higher cost sicker individuals who could not afford the increased out of pocket costs. The crowding effect would in turn raise premiums on the plans that did not use the change in AV requirements to offer lower premiums because these plans would have a disproportionately sicker enrollment group. The Center on Budget and Policy Priorities estimates that the proposed change in AV requirements would require a family of four with an income of $65,000 to either pay $327 more per year in premiums for a plan that meets the current AV requirements or face an $550 increase in their deductible if they purchased a plan with the new, lowered AV. Advocates should understand how AV requirements affect their communities, especially when it comes to lower income individuals who cannot shoulder higher out of pocket costs for their medical care. Advocates should submit comments to educate HHS on how AV requirements protect the most vulnerable and how relaxing these restrictions could affect these individuals.

Relaxing Network Standards: Under the ACA, insurers must offer a sufficient choice of providers in their plans’ networks. The proposed regulation seeks to weaken this provision by relying on state regulators and accreditation organizations to ensure network adequacy rather than HHS itself. There are some state regulators who will be able to handle this task, but other regulators are ill-equipped to do so. HHS also proposed to relax the requirement for insurers to include essential community providers, such as community health centers, safety-net hospitals, Ryan White Providers and Indian Health Services Centers, by requiring insurers to include within their network only 20% of essential community providers in their area rather than the 30% currently required. Advocates should reach out to their state regulators to understand how they anticipate reviewing network adequacy and pressuring insurers to include as many essential health providers who serve low-income medically-underserved individuals as possible in their networks.

One interesting aspect of the proposed rule is that it encompasses many of the demands presented by America’s Health Insurance Plans and the Blue Cross Blue Shield Association of America. This perhaps reflects the Trump Administration’s desire to keep as many insurers in the Marketplaces for 2018, especially with Humana’s high profile pull back from the 2018 Marketplaces. Advocates should make sure that the Administration does not forget that insurers are only one key stakeholder in the Marketplaces and that it is important for any new regulations also to reflect the need of consumers, particularly those living with chronic illnesses and disabilities who depend the most on their insurance to deliver the care they need.

Comments are due to HHS on March 7, 2017 and may be submitted electronically here. Advocates should also keep their eyes open for a comment template focused on access to care concerns, to be released by the Center for Health Law and Policy Innovation in the next few days, and which can be easily modified to facilitate submission of comments.

Health Care in Motion is written by:

Caitlin McCormick-Brault, Associate Director at the Center for Health Law and Policy Innovation; Carmel Shachar, Clinical Instructor at the Center for Health Law and Policy Innovation; and Phil Waters, Clinical Fellow at the Center for Health Law and Policy Innovation.

For further questions or inquiries please contact Carmel Shachar, cshachar@law.harvard.edu.

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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.

 

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