Thursday, November 29, 2018

Can The HIV Community Beat President Trump?

Guest Blog By: Josh Robbins, imstilljosh.com

Reprinted with Permission from Josh Robbins, imstilljosh.com

How to continue to survive Trump if you are living with HIV

Photo of President Trump with fire burning in the background
Photo Source: imstilljosh.com

The Trump Administration is weirdly disinterested in the HIV epidemic in the US. And that’s the biggest understatement that I have ever written. 

President Trump fired the remaining members of the Presidential HIV Council one year ago. The Office of National AIDS Policy has been empty since the beginning of his administration. (I called the day Trump was inaugurated to see if the office was still open and I left a voicemail. I have not received a return call. Shocker!?!?)

Money intended for funding the US fight against the epidemic at home and internationally has been chipped away and it appears that HHS is just trying to be quiet about it all—almost fly under the radar. Who can blame them? They are probably doing the best thing at the moment, honestly.

I inquired to HHS about PACHA (Presidential Advisory Council on HIV/AIDS) and the status of Kaye Hayes.

Here were my questions: 
  • Is Kaye Hayes still the executive director of PACHA?
  • How many members are currently on PACHA? Who are they?
  • What is the current status of PACHA?
  • When was the last time that PACHA provided guidance or input to the administration? Can I receive a copy of that?
  • When is the next planned meeting?
  • And if no members are currently on the council, is there any guidance being given to the current administration? If so, by whom?
Here’s the official response by the HHS spokesperson: 

“Kaye Hayes is still the executive director of Presidential Advisory Council on HIV/AIDS (PACHA), as well as Deputy Director of the HHS Office of HIV/AIDS and Infectious Disease Policy. In response to your other questions, we do not have any new information to share with you at this time, but we will contact you as soon as we do.”
Photo Soure: imstilljosh.com

I interpret this as no news. And silence. Not good!

This Is Not Going Well

When you think about the administration’s ‘less than friendly’ welcoming of immigrants and those seeking asylum in the U.S., or those visiting from other countries and remembering the nightmare Trump has put many through by changing travel rules and instituting immediate travel bans—it’s just so damn overwhelming. Honestly, I can’t even remember all the bad stuff.

Here’s the real tea about it: It’s only been two years! Can we all make it two more years?

YES! Yes, we can. And we will.

When Trump became President, I wrote about the best ways for us all to survive. Other popular websites in the HIV space called it the Trump-apocalypse.


So, how we continue to survive this administration?
  1. We are not the victims. We are must never view our advocacy as such. We are strong, healthy, and marginalized. But we will survive!
  2. We must engage the administration at every opportunity—not just complain. We were caught off our game when he was elected. We better prepare better for the 2020 election. 
  3. We must have a message of hope, based in science and demonstrate what we are advocating for—to live well. #UequalsU
  4. We still need to support national ASOs and organizations like ADAP Advocacy Association. 
  5. We need some of our leadership to change. We must identify new leadership to be our community voices. And we must stop allowing a small caucus to say they speak for us when they have missed the boat largely with U=U. 
  6. We must lean on each other when we need it. Sean McKenna calls it a buddy program. Get a buddy!!! 
  7. We must recognize disparities and work together to end them… and we must make room at the table for others who have been silenced or ignored. But we must not allow this to drive wedges within our community. We need to work together as one unit! 
  8. We need to ask for personal help when we need it. We are advocates and many are long term survivors. But we must allow our pride to disappear when we need help.
It has been a hell of two years, but it’s been a hell of an epidemic and we are going to make it!

I love you all!

Let’s do this!!!

[Check out the original blog post by Josh Robbins online at imstilljosh.com]



Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Thursday, November 8, 2018

Three Red States Expand Medicaid – What That Means for ADAP

Guest Blog By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

The 2018 midterm election was remarkable in several ways: over 47% of registered voters participated in this election – the highest turnout since 1966 which saw 49% (Domonoske, 2018); the Democratic Party regained control of the House for the first time since 2011; a record number of women won seats in the House (Watkins, 2018); two women became the first Native American women elected to Congress (Watkins); two other women became the first Muslim women elected to Congress (Watkins); Jared Polis became the first openly gay man to be elected governor of a state in Colorado. But something else historic happened, as well – Idaho, Nebraska, and Utah joined Maine in begin the only states to expand Medicaid under the Affordable Care Act (ACA) via a ballot initiative (Pramuk, 2018). And these states are pretty deeply Red.

Governor Paul LePage
Photo Source: Political Dig

For those unfamiliar with Maine’s Medicaid debacle, here is a quick rundown: Maine votes adopted a Medicaid expansion via a ballot initiative in November 2017 which required the submission of a state plan amendment within 90 days and implementation within 180 of the measure’s effective date (which would have been April 03, 2018). Maine’s famously cantankerous and curmudgeonly outgoing Governor Paul LePage (see pictured above) – who vehemently opposed expanding Medicaid – failed to meet that deadline, illegally ignoring the will of the voters – he famously stated he would go to jail before allowing Maine to expand Medicaid (Miller, 2018), and took the issue to court where he has been repeatedly smacked down by judges who insist that he comply with the law and implement the expansion. Governor-Elect Janet Mills – who campaigned on following the law and authorizing the Medicaid expansion and was elected in the 2018 midterm elections – appeared in court on Wednesday, November 07, to listen to arguments in an advocacy group’s case against the Maine Department of Health and Human Services (Bleiberg, 2018).

What is troublesome about the myriad refusals of LePage to abide by the law is that it may have just been a prelude to how Republican governors in these Conservative states may attempt to thwart the will of the voters in Idaho, Nebraska, and Utah. To be fair, two of these governors has in some capacity stated they will abide by the will of the voters: Governor-Elect Brad Little (Idaho) has stated that he will implement the initiative (Guilhem, 2018); Governor Pete Ricketts – just elected for a second term – though a vocal opponent of the measure, has previously stated that if expansion made it onto the ballot, it would be up to the voters (Quinn, 2018). Governor Gary Herbert of Utah vocally opposed Utah Proposition 3, which not only orders the expansion of Medicaid, but implements a prohibition against any changes that would reduce coverage, benefits, or payment rates below policies in place on January 01, 2017.

While these responses are not full-throated endorsements of expansion, they are likely the best we can expect from members of a political party that has vehemently opposed the expansion of Medicaid at almost every turn. The problem with their opposition, however, is that Medicaid expansion – and, in fact, Universal Healthcare in general – are highly popular; even amongst Republican voters, support for Universal/Single-Payer/Medicare-For-All healthcare provided by the government is growing steadily as healthcare costs continue to rise well above the rates of inflation and wage growth.

So, what does Medicaid Expansion mean for the AIDS Drug Assistance Program? Well, a few things:

What we have seen in states that implemented Medicaid Expansion under the ACA is that a significant percentage of ADAP/Ryan White recipients have been shifted off of the Ryan White Program and over to Medicaid. This has had various impacts, both positive and negative, for those who have traditionally relied upon Ryan White and ADAP for payment and coverage of the HIV treatment and medications. Depending upon the way the patient’s state implements Medicaid, they may now be required to pay premiums, deductibles, and/or co-pays for doctor visits and medications that were previously covered by Ryan White and ADAP. That said, Ryan White funds canbe used to cover those costs (HIV/AIDS Bureau, 2014).

Patients living in states that have not expanded Medicaid often have to wait for an AIDS diagnosis in order to qualify for Medicaid coverage, even if they meet the income threshold. Additionally, certain states may also require that patients’ Viral Load or CD4 T-Cell numbers meet a specific threshold, as well, meaning that, if a patient’s Viral Load falls below or CD4 T-Cell count rises above the designated threshold for approval, they may lose their eligibility for coverage. This was my case in West Virginia before the state expanded Medicaid. Expanding Medicaid means that people living with HIV no longer have to wait for an AIDS diagnosis in order to qualify for Medicaid coverage (so long as their income is below the threshold).

The shifting of these patients off of Ryan White ADAP budgets has resulted in lower expenditures on drugs and other HIV treatment costs, which allowed the Ryan White Program to begin providing payment for private health insurance for all Ryan White clients using Ryan White funds through insurance assistance. Only three states do not provide this service – Texas, Idaho, and Mississippi. With the expansion of Medicaid in Idaho, this may allow the program the resources to begin doing so.

In order to shift clients off of Ryan White and onto Medicaid, a client’s income must fall within the specified percentage of the Federal Poverty Level (FPL) respective to each state’s guidelines. In most expansion states, that threshold is 138% of the FPL ($16,753.20 per year for an individual). This percentage for eligibility for Ryan White ranges from 200% (Idaho, Iowa, and Texas) to 550% (South Carolina), which is much more forgiving than the Medicaid requirements.

An additional issue can arise with patients who have been shifted onto Medicaid, as well. While the Ryan White Program was designed solely to focus on the needs of people living with HIV, Medicaid – which is the largest payor for HIV services in the United States – was not designed specifically with the needs of HIV patients in mind. There may be something of a barrier to care and treatment that exists when patients who are used to dealing with Ryan White staff who are familiar with the social, psychological, and medical needs of HIV patients are suddenly expected to communication with Medicaid employees who may not be sensitive to or accommodating of the unique needs of people living with HIV. While it may seem small, that simple communication barrier can lead to lower adherence to medication regimens, missed appointments, and falling out of the continuum of care. The National Alliance of State and Territorial AIDS Directors (NASTAD) holds numerous Technical Assistance conferences and meetings throughout each year where Medicaid directors and staff can attend various workshops and plenary sessions that teach them better ways to approach people living with HIV and to increase cultural competence when dealing with this population.

In general, Medicaid expansion has been a boon for the Ryan White and ADAP Programs. Hopefully, the transition to expanded Medicaid coverage in Idaho, Nebraska, and Utah will be smooth, and people living with HIV will gain access to more options to treat their disease and lead happier, healthier lives.

References:


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.


Thursday, November 1, 2018

HIV Patients Co-Infected With HCV Face Higher Mortality Rates

Guest Blog By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

Reprinted with Permission from the Community Access National Network

A ten-year follow-up study has found that people living with HIV who are co-infected with Hepatitis C (HCV) face an increased risk of mortality by 4.3%, even when receiving treatment for HIV (Bender, 2018). The same study found that treatment with HCV Direct-Acting Antivirals (DAAs) resulted in a lower risk of mortality than those whose HCV went untreated, but that the harm caused by HCV still resulted in increased risk.

'Sensational' Hep C Response Rates in HIV Coinfection Trial
Photo Source: medscape.com

One of the primary consequences of untreated HCV infections is damage to the liver – damage that is no immediately repair itself once the virus is successfully treated. Liver fibrosis – scarring of the liver that prevents the organ from properly functioning – is not healed by HCV treatment, and depending upon the severity of the scarring, the liver may never completely regenerate. Those whose livers are cirrhotic – those with late-stage liver scarring – will likely never fully recover optimum liver function and may become dependent upon other prescription medications and dietary restrictions to aid in liver functions such detoxifying substances in the body, purifying blood, and making vital nutrients (Welch, 2017).

This issue is one that receives far less attention than it deserves and is part of why there is so much opposition against including Fibrosis Scoring in treatment determinations. While it may seem financially prudent in the short-term to limit treatment of HCV to those who are “sick enough” to be treated, the long-term negative health impacts of liver scarring are far costlier in the long-term. For those living with HIV, liver function is of critical concern as that is where most HIV medications are metabolized. If liver function is impaired, the drugs may not properly metabolize, making the treatment of HIV less effective.

References:


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.