Medicaid Value

Medicaid is big and growing — but should it be reined in? Alexandrta Bachert, Staff writer for MedPage, discussed the value of Medicaid and I thought that it would be important in light of the budget and new health care policy cutting back on Mecicaid. The House Republicans and the White House have recently proposed massive reductions in the Medicaid program, which could shave more than $1 trillion from projected expenditures over the next 10 years.

Much of the debate over these cuts has centered around the effects on children and the poor, but about 40% of the Medicaid budget pays for long-term care for the elderly, many of whom are poor only on paper. In this edition of “Friday Feedback,” experts discuss the critical role Medicaid plays in the healthcare system, particularly for America’s increasingly numerous seniors, and what might happen if funding is slashed.

To what extent has Medicaid gone off the rails, relative to its original intent? Or was the original intent faulty?

Diane Rowland, ScD, Kaiser Family Foundation: The original intent was that Medicaid would be a companion to Medicare in meeting the health needs of the nation’s poor and disadvantaged population — a role it has filled well.

Hemi Tewarson, JD, MPH, National Governors Association: Medicaid is now the largest public payer of health insurance, covering 1 in 5 Americans in 2016 and half of all births nationally. The magnitude of the program and its complicated structure has certainly evolved since the program’s inception. However, the program is still serving our nation’s most vulnerable populations, through a federal-state partnership, which was the original intent of the program.

Leighton Ku, PhD, MPH, George Washington University: Medicaid always had a broad mission to serve the needy, including low-income children, adults, the elderly, and the disabled. It has kept that mission, but broadened it over time as it became necessary — as we learned of the importance of home and community-based care and of difficulties that low-income adults have getting insurance.

Sara Rosenbaum, JD, George Washington University: Medicaid’s purpose always has been to help people gain access to medically necessary care. Over a half century, Congress has repeatedly and steadily expanded the range of people in need who can qualify for Medicaid. What makes it so unique is its ability to evolve over time. There is nothing about the adult expansion that in any way is at cross-purposes with its original “intent.”

Tom Buchmueller, PhD, University of Michigan: I wouldn’t describe Medicaid as going off the rails. Going back to the program’s origins, it was political considerations that led to Medicare being a universal program and Medicaid being means-tested. Very quickly, Medicare became a cherished and politically sacrosanct institution, while Medicaid has struggled for political support. But now that Medicaid is the larger program in terms of enrollment, we need to recognize it for what it is: a critical part of the healthcare system.

Kenneth Brummel-Smith, MD, Florida State University: I don’t think it has. The original intent was to help states provide medical care to poor residents. Prior to 1965, old and poor people were more likely to die from treatable conditions than after Medicare and Medicaid were passed. The problem with Medicaid is that the states (and the feds to some degree) have never put enough cars on the tracks to handle the need.

Chris Pope, Manhattan Institute: The original intent of Medicaid was somewhat nebulous. The program has always given enormous discretion to states – in terms of which services are covered, who is eligible for them, and how they are delivered. That said, the program has been expanded by Congress over time, and the 1999 Olmstead Supreme Court decision greatly expanded the entitlement to long-term care in the home.

Matt Salo, National Association of Medicaid Directors: Medicaid didn’t set out to be the largest payer of long-term care in the country, but since Medicare doesn’t offer a comprehensive benefit; we’re there to pick it up. Medicaid probably should be “less necessary” in the healthcare system than it is today, but the fault doesn’t lie within Medicaid and that certainly doesn’t mean that Medicaid is broken and needs knee-jerk fixing. It means that the broader healthcare system is broken. To really fix Medicaid, you have to ensure that the roles it plays today are adequately and affirmatively picked up somewhere else.

How much of a problem is it that so much of eldercare is now dependent on Medicaid?

Brummel-Smith: It’s huge and going to get bigger. The aging of the population means more will need help with medical care and the older population is high consumers of healthcare. Here’s the paradox of providing good care — people live longer which means they’ll need more long-term services and supports. They don’t want to buy long-term care insurance, or they can’t afford it. And the size of families is decreasing meaning they’ll be fewer family caregivers. And we have an anti-immigration attitude, yet immigrants are the main people who are willing to work in these jobs. A perfect storm.

Buchmueller: The patchwork system we have for financing long-term care has many problems that will only become more challenging as the population ages. It is too bad that we are spending so much time and energy fighting about Obamacare — and trying to undo its real successes — instead of trying to address the issue of long-term care and other real issues that the U.S. healthcare system faces.

Pope: Family has always taken most of the responsibility for caring for older adults, largely uncompensated, and often at substantial personal cost. This remains the case, but families are more fragmented than they used to be and people are moving further for work — this increases the need for paid care. There will not be enough money for the government to cover all long-term care services for everyone, and so it is essential to limit Medicaid long-term care to those who have no other sources of assistance, and find ways of leveraging alternative resources wherever possible.

Tewarson: As Medicare and other commercial plans do not cover most nursing facility services and home and community based services, Medicaid is often the only option and as a result, is now the single largest payer of long-term services and supports (LTSS) in the U.S. If federal Medicaid funding was capped, states may need to consider different options, which could include reducing the number of individuals receiving LTSS in states that have a rapidly growing elderly population.

Rowland: Medicaid was always intended to help those on Medicare who were low-income and needed assistance with filling Medicare’s gaps — especially for long-term services. Because efforts to broaden long-term services beyond Medicaid have not succeeded, Medicaid remains the primary source of help for elders in nursing homes or needing help with long-term care in the community.

George Grossberg, MD, Saint Louis University: People are too dependent on Medicaid to pay for long-term care, especially nursing home care. Far too few have long-term care insurance or use family resources or save over a lifetime to pay for needed long-term care in the future. This places an inordinate burden on taxpayers, especially with our booming older adult population.

As for the rest of Medicaid, with the growing cost due mainly to the increasing costs of healthcare, won’t budget cuts simply deprive the poor of access to care?

Brummel-Smith: Absolutely. The biggest concern is that these folks are not good advocates for themselves — they are sick, frail, and often demented. I’m afraid that the government’s response will be following the words of Ebeneezer Scrooge — “They had better die and decrease the surplus population.”

Grossberg: Yes. Medicaid is insurance for the poor. Medicaid cuts will hurt those without personal/family resources the most, whether children or adults.

Daniel Derksen, MD, Arizona Center for Rural Health: You don’t save money by throwing millions off of coverage. That strategy shifts costs to states, to individuals and their families, and to physicians, hospitals, clinics and nurses through uncompensated and charity care. It strains credulity to cut almost a trillion dollars of federal funding to state Medicaid programs over the next 10 years, and claim that bill gives states more autonomy.

Joanne Lynn, MD, Altarum Institute: Cuts in Medicaid for the disabled elderly mean that people with no other options will be desperate before they get help, and the help will be inadequate. We will nearly triple the number of frail elderly Americans in the first half of this century. When we are old and frail, we will most likely have few financial resources and volunteer caregivers. The country should be making plans for an aging population and building more reliable and efficient systems in the few years before the Boomer generation starts hitting their years of disability. Simply cutting Medicaid won’t accomplish that.

Stephanie Woolhandler, MD, MPH, Hunter College: Rising Medicaid costs have been due to a large extent to the increasing number of people covered by that program. As employer-based insurance covered a shrinking share of the population, Medicaid filled the gap. Cuts to Medicaid are likely to result in both worse quality of care for those who remain covered, and cuts in the number covered. Many will suffer.

Rowland: With rising health costs and a growing elderly populating, reductions in the federal financing of Medicaid will place serious strains on state’s ability to maintain coverage and services for their low-income population. Both coverage and access to care are at risk.

Rosenbaum: Medicaid’s costs in the coming years are heavily driven by rising enrollment. In terms of covering the poor, Medicaid is the most cost effective means of doing so — 50% lower than private insurance for the same basket of services. Those who qualify for Medicaid because they are poor will go without access to affordable coverage if benefits are taken away. Just compare the uninsured rate among the poor in non-expansion states to that for the poor in expansion states. All of our gains will be lost.

Ku: It is very clear that Medicaid costs per person grow more slowly than per person costs in private insurance and Medicare. Medicaid is already very efficient and pays less than other forms of insurance. Federal efforts to shift costs to states will generally be problematic for states, which must balance their budgets. It may be possible to modify benefits or payment rates to become more efficient, but this is hard to do and takes time, trial, and assessment. It’s not clear that conservative politicians have the patience or temperament to figure out what works best while harming the fewest number of beneficiaries.

“Medicaid probably should be ‘less necessary’ in the healthcare system than it is today, but the fault doesn’t lie within Medicaid and that certainly doesn’t mean that Medicaid is broken and needs knee-jerk fixing.” — Matt Salo, of the National Association of Medicaid Directors, on the current debate over whether Medicaid has grown too big.                                                                                                                               “The scientists, the physicians in our country are under assault with this Trump budget.” — Sen. Ed Markey (D-Mass.), addressing a rally organized by the American Thoracic Society in Washington. Providers are now asking- how much pain will per capita caps in Medicaid bring?                                                                                                                        The administration released what it calls a “Taxpayer First” budget on Tuesday. “This is, I think, the first time in a long time that an administration has written a budget through the eyes of the people who are actually paying the taxes,” White House Budget Director Mick Mulvaney told reporters in a briefing on Monday. The plan was crafted with a skeptical eye toward programs that serve the needy. Over a decade, it calls for hundreds of billions of dollars in cuts to Medicaid, food stamps and disability benefits. Marie Lee, last week, reported that the end of Medicaid as an entitlement program is a coming, provider sand political observers say. Now the question is how much will the federal government seek to reduce its spending on the insurance program that covers 70 million people—and how much will senators listen to providers who say that care could ultimately become unattainable for people if the House version of a per capita cap is approved. 
The American Health Care Act, passed by the House in early May, aims to cut federal spending on Medicaid by $834 billion by 2026, and it’s hard to know exactly how that will play out for patients and providers, said Grady Health System CEO John Haupert.
“You would have to look at every channel Medicaid flows through,” he said. “Long-term care. Outpatient—what will be covered? What won’t? It has to come from somewhere.”
Grady sees 650,000 visits each year at six clinics and a specialty HIV/AIDS clinic, and has 27,000 inpatient admissions. It also has a 300-bed skilled-nursing facility.Medicaid covers the vast majority of patients in the nursing home, and 30% of all patients are enrolled in the program.
What he knows is that Georgia isn’t going to step in and increase funding to replacethe declining federal share.
Combined state and federal spending on Medicaid in Georgia is about $4,000 a person, 48th in the country. “There’s a reason why we’re 48th, put it that way,” Haupert said of the state’s willingness to spend on medical care for the poor. 
Cleveland’s MetroHealth system has about 280,000 patient visits a year, with half covered by Medicaid. Dr. Akram Boutros, CEO of the public hospital and its health system, fears that what will be left for Medicaid will not be enough to cover the cost of treating the population, which tends to have a higher disease burden than the general population. 
Boutros understands that providers need to find ways to bend the cost curve, whether in Medicaid or any other patient group, noting that the health system did a medical home demonstration with 28,000 Medicaid expansion patients in 2013 that resulted in $41 million in reduced costs. Ohio cut payments for outpatient Medicaid services by 5% in 2016.
“And remember,” he said, “We’ve been through this before. The American hospital system was asked to take Medicare cuts to fund Medicaid expansion.”
Katherine Hayes, director of health policy at the Bipartisan Policy Center, agreed. “Providers were asked to pay for a lot of the health reform, and now they’re paying for it again—more than paying for it again—with less coverage.”
Hayes, who worked for both Democrats and a moderate Republican senator in her time on the Hill, said the structure of a per capita cap isn’t necessarily a problem, it’s how much the federal government aims to reduce its share of spending.
“When you are putting in $834 billion in Medicaid cuts, you cannot make up the difference by scaling back eligibility of the Medicaid expansion,” she said.
Georgia never did a Medicaid expansion, which Grady estimates would have brought $25 million in revenue to the system. Still, Grady reduced its uncompensated care by $68 million, going from the equivalent of 41% of total revenue to now 28%. The system hired navigators to get qualified patients enrolled in Medicaid.
Because the ACA’s phase-out of disproportionate-share hospital payments was delayed, Grady still receives $80 million a year. The phase-out would have reduced it by $45 million a year.
To soften the blow of Medicaid cuts, House GOP leaders would make disproportionate-share payments permanent, for a nationwide price tag of $43 billion. Haupert said that would not nearly make up for the effects of the per capita cap.
When he was lobbying in Washington against the AHCA, he asked a Georgia Republican lawmaker why the savings couldn’t come both from Medicare and from Medicaid. He said the member replied: “If you mess with Medicare, you don’t get re-elected; if you mess with Medicaid, no one really cares. ”
Haupert said as he sees the political backlash against the AHCA, it seems that sentiment’s not totally wrong. Nearly all of the focus has been on the individual market, which is 4% to 5% of his system’s patients. Will people in the individual market who are sick have access to insurance they can afford to buy? Will modest-income older customers be able to buy plans?
He said he knows many people whose parents’ nursing home or other long-term care costs have exhausted their savings, ultimately sending them to Medicaid. Most people never think that will be them, he said, and many wrongly assume Medicare pays for assisted living and nursing home stays.
Still, Haupert believes senators are open to hearing from providers about what kinds of changes are too radical for the system.
“I think in general the Senate is doing a bit more due diligence around this,” he said. “I still sense this high level of pressure to get it done, get it done. When you’re in a hurry, that’s when you make mistakes.”
Hayes said she believes providers’ lobbying will make a difference. And, she said, senators are paying attention to the Congressional Budget Office’s scoring that showed the changes to the ACHA did little to move the dial on the number of people who would become uninsured. The most recent report estimated that 23 million people would lose coverage by 2026; scoring of the original bill in March put the number at 24 million.
Besides the direct financial implications for providers, the potential loss of coverage poses another challenge, says Dr. Nick Turkal, president and CEO of Aurora Health Care, a 15-hospital system based in Milwaukee. “The other thing that concerns me is that we’ll be going back to people coming to the emergency department in a crisis rather than getting the care they need in preventive services and primary-care services. That’s not an efficient way of getting care,” he said.
Haupert said he hopes the per capita cap allows below-average spending states to catch up to more generous states, or at least that there will be special consideration for safety-net systems like his. For Grady, the cuts to Medicare were very minor, just $8 million in the last four years. “Our margin, with county support, is around 4%,” he said, and they received $55 million from the counties they serve last year. “Without county support we’d be at about a negative 1%.”
He said when he talks with county officials about what’s happening in Washington, he can see they fear if the federal government steps back, then the bill will come due first to states, and then, they’re asking themselves, “Is this going to land in our lap?”

So, budgeting is going to impact a number of programs in all areas including health care. We need to look carefully at where the money goes and whether it is worth decreasing those programs that serve as safety nets. If we want to cover all we need to come to grips with the fact that some where we are going to find a way to pay for it all and maybe lowering taxes will impact all programs as well as health care. What other ways to we have to pay for 24 million people who need financial assistance? Think about it and yes I will be discussing this aspect further in my answer to our health care dilemma.

Happy Memorial Day to all and remember why we have set aside this day- to remember those who gave their lives for all of us., to protect our freedoms..

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!

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

April2017AvenueCSGflyer1

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.

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