Thursday, May 28, 2020

Missouri Governor Issues Proclamation on HIV/AIDS

By: Sarah Hooper,  intern, ADAP Advocacy Association, and rising senior at East Carolina University

In a recent proclamation by Republican Missouri Governor Michael L. Parson, the month of April was designated HIV Awareness Month. He is the first governor to issue a proclamation acknowledging the national "Ending the HIV Epidemic: A Plan for America." The Missouri proclamation references testing (diagnosis), treatment and prevention.

The Ending the HIV Epidemic ("EHE") plan - announced in 2019 - was developed by agencies across the U.S. Department of Health and Human Services (Offices of Infectious Disease). EHE provided 57 geographic focus areas where HIV transmission occurs at a high rate, and Missouri is one of only seven entire states that is a jurisdiction of focus. The goal of the EHE is to reduce new HIV infections by 75% by 2025 and by at least 90% by 2030 by focusing on four pillars: prevention, diagnosis, treatment, and outbreak response by working with programs, resources and the infrastructure of HHS agencies and offices nationwide (Offices of Infectious Disease).

Nationally, HIV/AIDS Awareness Month is usually recognized in December, but Governor Parson chose to hold the month of recognition in April. Missouri has 447 annual HIV diagnoses as of 2018 and estimates 12,529 total people living with diagnosed HIV. However, only 87% have knowledge of their HIV status, leaving many more individuals who may be living with the virus and completely unaware (CDC).

When left undiagnosed, HIV positive individuals can transmit to others unknowingly and the virus may progress within their own bodies to the point of serious consequences. Governor Parson addresses diagnosis in his proclamation as one of the four pillars vital to addressing the HIV epidemic in America.

A resolution in support of the HIV Viral Load Suppression in Improving Health Outcomes and Reducing Transmission was adopted by many members of the National Lieutenant Governors Association ("NLGA") in March of 2019. State governors who sponsored the resolution included Wisconsin, Hawaii, Delaware, Missouri, Virgin Islands, Kansas and Vermont.

The sponsorship of Missouri’s Lt. Governor Mike Kehoe may have helped to push the Missouri Governor’s recent proclamation to light and stressed the importance of HIV awareness. The NLGA resolution reads, in part:

“Whereas, over 1.2 million people living in the United States are infected with HIV, and one in eight is unaware of the infection… Whereas, viral load suppression not only improves individual health, but it also reduces HIV transmission on a population level.” (2019, March)

By addressing the HIV epidemic on a state level and national level, progress will begin to accelerate in each state. Missouri’s Governor has set a great example to other states on how to begin addressing the HIV Epidemic and bring awareness to a virus that had such a “taboo” stigma surrounding it for many years. Many advocates believe this proclamation will save lives and help de-stigmatize HIV for those who still may hold certain negative views around the virus and those who are living with it.

Since 1981, more than 700,000 Americans have lost their battle to HIV (Offices of Infectious Diseases). While the numbers of infections and deaths have declined over the years with the increase of HIV education, the issue remains: those who may spread the virus without knowledge. I truly believe that both the Missouri and National plan to stop the spread of HIV and better educate the general public on the virus will help to destigmatize the disease and help lower the number of cases nationwide.

References:
  • Geographic Priorities. (2020, May 21). Retrieved from https://www.cdc.gov/endhiv/priorities.html?CDC_AA_refVal=https://www.cdc.gov/endhiv/data.html
  • Office of Infectious Disease. (2020, May 8). Overview. Retrieved from https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview
  • Resolution In Support of HIV Viral Load Suppression in Improving Health Outcomes and Reducing Transmission. (2019, March). Retrieved from https://nlga.us/wp-content/uploads/Resolution-In-Support-of-HIV-Viral-Load-Suppression-in-Improving-Health-Outcomes-and-Reducing-Transmission-2.pdf
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, May 21, 2020

Medicaid Block Grant Funding and HIV

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

For three decades, Republicans at both the state and federal levels have been attempting to convert social services programs, such as Welfare and Medicaid, over to block grant funding systems. One example of this conversion is the Temporary Assistance for Needy Families (TANF) program, created in 1996 and implemented in 1997. More recently, Republicans have been seeking for much of the past two decades to do away with the existing open-ended funding model that supports our current Medicaid system, and replacing it with block grant funding. Since Donald Trump began occupying the White House, Republicans, for the first time in recent memory, had a real chance to begin overhauling programs they felt were flabby and inefficient money pits with the support of a Republican House, Senate, and Executive running full steam behind it.

Those who work in public health, as well as those who work in HIV advocacy and activism, immediately began a campaign against this effort to do away with current Medicaid funding, particularly after winning in 2010 with the Medicaid expansion portion of the Affordable Care Act (ACA). They predict epic funding cuts, a return to wait lists for HIV treatment, and rationing of care that will put a target on the backs of people living with HIV.

Medicaid
Photo Source: WBBJ-TV

The concept of block grant funding has been a popular one in Conservative circles for decades, stretching back to the Nixon Administration, for Republicans, and also with Conservative Democrats, prior to the point when the party’s support of the Civil Rights Act caused said Conservative Dems to flee for redder pastures. Block grant funding, they have argued and continue to argue, allows local jurisdictions (i.e. – states) more “flexibility” to best determine how funds are used, giving states the ability to “innovate” and “experiment” with new approaches to solving various problems in ways that are unique to their population demographics, geography, and local scarcity of resources.

Critics, on the other hand, argue that, in virtually every instance where block grant funding is used, the number of people who can be helped is restricted by the amount of the block grant. Moreover, they argue that block grant funding is not responsive, meaning that funding stays constant without being adjusted to account for exigent circumstances, such as recessions, depressions, natural disasters, health emergencies, local job markets, et cetera.

Essentially, block grant funding works like this:
  1. A legislative body determines the maximum amount of money that can be spent;
  2. The federal department where those grants are housed (e.g. – Housing and Urban Development; Health and Human Services; Health Resource Services Administration, et cetera) comes up with a list of regulations that attempt to define how those grant monies must be used, and on what things they cannot be used;
  3. That body then allocates those funds and distributes them to states in the form of block grant awards, the amount for which are determined using a formula based upon various objective measures, such as (but not limited to) total population, the percentage of residents earning incomes that fall into the various tax brackets based upon tax filing, the number of children living in families that fall into those tax brackets, the cost of living (a calculation that is, itself, woefully outdated and in need of an update), the federal and state minimum wage, median incomes, et cetera ad nauseam;
  4. States receive whatever grant award is decided, and then have relative carte blanche to spend the funds however they see fit, so long as they stay within the federal guidelines of appropriate usage. This includes setting various eligibility standards, annual benefit caps per recipient, lifetime limits on eligibility, and other ways to “save money” while still being able to say that they use the funds as intended by the grantor.
One great example of this type of funding model in action is the Temporary Assistance for Needy Families program.

TANF
Photo Source: cva.ks.gov

In 1996, Republicans in Congress succeeded in dismantling the Aid to Families with Dependent Children (AFDC) program created in 1935 by the Social Security Act, replacing it with the Temporary Assistance for Needy Families (TANF) – a block grant-funded program that has a maximum benefit of two consecutive years and a five-year lifetime limit for beneficiaries.

This setup, Republicans and Neoliberals argued, would serve to “motivate” recipients to get off of the government dole and pull themselves out of poverty. It was deemed a “Welfare-to-Work” model, in which recipients either had to find better paying jobs, or else. Doing so, they argue, will give recipients a sense of pride and accomplishment, and help further their upward social and economic mobility toward the attainment of the American Dream.

In practice, however, the TANF program has had a net negative result for the very reasons opponents of block grant funding warned:
  1. States are allotted a dollar amount that is not adjusted for inflation, meaning that the pot of money they’re given has less spending power, over time. The value of all state TANF grants in 2014 was 30% lower than when those amounts were first allotted in 1997 (Hahn & Coffey, 2017).
  2. State grants for TANF are fixed, meaning that they do not increase (or decreased) based upon changing levels of need. This means that, for each increase in the number of residents who qualify for TANF dollars, the amount available for each recipient decreases (Hahn). 
  3. State grants for TANF also lock in inequality in state funding, because those grant award amounts were determined based upon pre-TANF state spending on welfare-related activities prior to TANF being enacted (Hahn & Coffey). This means that states that spent a lot of money on welfare per capita prior to reform received higher grant amounts, while states that spent the least amount of money were locked into receiving the lowest grant awards until such time as TANF is dismantled or grants are reconfigured.
So, how have states implemented the TANF program and utilized the block grants? The answer is, “Mostly poorly.”

The key feature of the TANF program, proponents argued, was that states could shift the funds freed up when families left welfare for work to childcare or other work supports, where need would increase.  States also could invest more in work programs to reflect the increased emphasis on welfare as temporary and work focused.

That is not what happened:
In TANF’s early years, when the economy was strong and cash assistance caseloads were shrinking, states used the flexibility of the block grant to take some of the funds that had gone as benefits to families and redirect them to child care and welfare-to-work programs to further welfare reform efforts.  But over time, states redirected a substantial portion of their state and federal TANF funds to other purposes, to fill state budget holes, and in some cases to substitute for existing state spending.  Even when need increased during the Great Recession, states were often unable to bring the funds back to core welfare reform services and instead made cuts in basic assistance, childcare, and work programs. (Schott, Pavetti, & Floyd, 2015).
At its outset, 70% of combined federal TANF and state Maintenance of Effort (MOE) funds went for basic assistance to poor families. By 2014, basic assistance represented only 26% of spending (Schott). Moreover, states are using a larger and growing share of TANF funds for “Other” state services by replacing existing state funds, thereby freeing up those existing state funds to be used for purposes unrelated to providing a safety net or job opportunities for TANF recipients (Schott).

With rare exception, the states that use more than 30% of TANF funds on Basic Assistance were Democrat-run (of 11 states in 2014, only Tennessee, Virginia, Alaska, Kentucky, and South Dakota were run by Conservatives). By comparison, the 10 states spending less than 10% on Basic Assistance were all run by Republicans (Schott).

This is largely indicative of a difference in ideological spending priorities between the parties, but is also reflective of attitudes toward assistance for the needy: for the most part, Republican-led legislatures prioritized “Other” spending priorities over providing Basic Assistance to needy families, while Democratic-led assemblies made that spending more of a priority.

After the Great Recession hit, in 2008, most states (both Democratic and Republican) cut state spending on childcare. These cuts reflected more restrictive policies about who could access childcare assistance, rather than being responsive to the need for childcare assistance (Schott).

What Schott and other researchers have found is that the so-called “flexibility” provided to states to address poverty-related spending priorities resulted in fewer innovative programs (such a Welfare-to-Work initiatives), and more spending in areas that did not result in direct assistance for needy families.

TANF is a great predictor of what is likely to occur should the Medicaid program be converted to a block grant-funded model. In practice, what has occurred is that the poorest people still end up receiving less, because TANF is not responsive to real world conditions.

When Republicans once again trotted out the idea of switching Medicaid to a block grant-funded program, public health experts and chronic illness advocates cried out in near unison, “THIS IS A TERRIBLE IDEA!!!”

So unpopular is the term “block grant,” that the Trump Administration rolled out a new and improved rebranding in 2020, calling it the “Healthy Adult Opportunity” program.

See? It’s not a “block grant,” anymore. It’s an “opportunity.”

If this sounds like the same justification used to push welfare reform, that’s because it is. The intent behind this movement is the same: to get as many people off of government assistance programs as possible, regardless of the method or the end results.

Medicaid
Photo Source: HIV Plus Magazine

Medicaid is the largest source of insurance coverage for people living with HIV, estimated to cover 42% of the adult population living with HIV, as opposed to just 13% of the overall adult population. Medicaid spending on HIV also accounts for 30% of total federal spending on HIV care, and is the second-largest source of public financing for HIV in the U.S. Moreover, Medicaid covers a variety of wraparound health services which are important for people living with HIV, including prescription drug coverage, inpatient and outpatient care, and preventive health services (Kaiser Family Foundation, 2019).

While the Healthy Adult Opportunities façade does allow exceptions for medications used to treat behavioral health (read: addiction) and HIV, the decision about whether or not states include those exceptions is left up to the individual states. Even if states do allow for exceptions for HIV, our experience with how the TANF program has been implemented, particularly in Conservative-run states, serves as an excellent omen of things to come:
  • the types of services covered will be cut;
  • states will increase eligibility requirements to make it more difficult to qualify for coverage;
  • enrollment numbers will be capped or frozen to prevent newly-diagnosed people from enrolling in state Medicaid programs, even if they’re eligible;
  • the number and types of drugs covered will decrease, meaning fewer available treatment options will be available for patients;
  • providers will face lower reimbursement levels
  • patients will be required to pay for a larger percentage of covered services. (Molozanov, 2020)
These aren’t theories; they’re based upon example of how various states have attempted to “save money” by reducing how much they spend after they’ve used up their allotted block grant funds. Just like with the TANF program, should states be allowed to “experiment” with Medicaid block grant funding, we will assuredly see similar attempts to “save money.”

The cost of treatment and healthcare is going to rise. With the pandemic outbreak of COVID-19 threatening to throw us into another Great Depression (because, let’s face it – we’re already in the beginning stages of another Great Recession), more people will be in need of coverage from state Medicaid programs as employers attempt to cut costs by furloughing or outright laying off employees, and thereby ending their employer-provided health insurance coverage. Were Medicaid currently funded using a block grant model, those people would be, for lack of a better word, “screwed,” as states would rush to tighten eligibility requirements, reduce the number of covered services, and everything in their power to cut spending on this “entitlement,” regardless of the skin color or political affiliation of eligible citizens.

Even with exceptions for HIV and certain other conditions, evidence has shown, time and again, that, when faced with tough times, states will opt to restrict access to social services programs, whether or not block grant funding is employed. At least with open-ended Medicaid funding, the funds won’t simply stop after a certain point; at least people won’t be faced with lifetime limits on whether or not they can even apply or be eligible.

References:
  • Hahn, H. & Coffey, A. (2017, February 05). What TANF can teach us about block granting social services. Washington, DC: Urban Institute: Urban Wire: Poverty, Vulnerability, and Safety Net. Retrieved from: https://www.urban.org/urban-wire/what-tanf-can-teach-us-about-block-granting-social-services
  • Kaiser Family Foundation. (2019, October 01). Medicaid and HIV. Washington, DC: Kaiser Family Foundation: HIV/AIDS: Medicaid and HIV. Retrieved from: https://www.kff.org/hivaids/fact-sheet/medicaid-and-hiv/
  • Malozonov, D. (2020, January 30). MEDICAID “BLOCK GRANTS” WOULD BE DEVASTATING TO PEOPLE LIVING WITH HIV AND HEPATITIS. Washington, DC: National Alliance of State and Territorial AIDS Directors: Blog. Retrieved from: https://www.nastad.org/blog/medicaid-block-grants-would-be-devastating-people-living-hiv-and-hepatitis
  • Schott, L., Pavetti, L., & Floyd, I. (2015, October 15). How States Use Federal and State Funds Under the TANF Block Grant. Washington, DC: Center on Budget and Policy Priorities: Research: Family Income Support. Retrieved from: https://www.cbpp.org/research/family-income-support/how-states-use-federal-and-state-funds-under-the-tanf-block-grant
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, May 14, 2020

Bad Medicine Prescribed by the Trump Administration, Putting Health Insurers before Patients

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Earlier this week the Centers for Medicare & Medicaid Services ("CMS") issued the final Notice of Benefit and Payment Parameters for the 2021 benefit year, also referred to as the 2021 Payment Notice. CMS hailed the announcement as continuing "the Trump Administration's efforts to promote affordability, improve consumer choice, ensure program integrity, and increase market stability," yet it was met with strong criticism from the patient advocacy community. The ADAP Advocacy Association blasted the Trump Administration for putting the deep pockets of the health insurance industry before the needs of patients living with chronic health conditions, such as HIV/AIDS.

Money and Prescription Drugs
Photo Source: Patients Rising Now

Most troubling for patients is the decision allowing health insurance companies to disallow drug manufacturer co-pay assistance programs towards patient out-of-pocket cost sharing and deductibles.
Co-pay savings programs are offered by drugmakers, thereby reducing out-of-pocket costs for patients. Some programs, such as co-pay coupons are typically for "expensive, brand name drugs without a generic equivalent" (Chase, 2019).

According to a statement issued by Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, "In 2018, drug manufacturer copay assistance totaled $13 billion, according to data from IQVIA. The new rule is a complete reversal of the administration's policy announced last year that required copay assistance to count for brand name drugs that do not have a generic."

That sentiment was echoed by Bill Remak, chair of the International Association of Hepatitis Task Forces: "This is a major setback for patients living with viral hepatitis and related diseases and will effectively raise patient costs and reduce access to critical medications. On behalf of the millions of people living with viral hepatitis, we urge the Trump Administration to reverse this rule and not adopt policies that do not count copay assistance toward their deductible and annual out-of-pocket limit. With the COVID-19 pandemic, this move creates even more barriers preventing patients from getting the medications they need."

CANN Tweet

Twitter also was filled with condemnation from the patient advocacy community, including rebukes from the Community Access National Network (CANN) and The AIDS Institute.

The AIDS Institute Tweet

The PAN Foundation warned disallowing co-pay accumulator programs will hurt vulnerable patients by shifting the cost burden over to them.

According to Patients Rising Now ("PRN"), "patient assistance programs are providing free medications, expanding patient support services and increasing access to care as a way to help millions of patients struggling to pay the bills during the COVID-19 pandemic." PRN characterized the decision by CMS as flawed and asked that they reconsider the final rule.

The All Copays Count Coalition - representing a broad spectrum of patient groups - sent a letter to HHS Secretary Azar prior to the final rule urging HHS to reconsider the co-pay provision. It obviously fell on deaf ears because the Trump Administration sided with the greedy health insurers rather than the patients who need the financial assistance.

A copy of the 2020 Final Payment Notice can be downloaded online: https://www.cms.gov/newsroom/press-releases/cms-announces-final-payment-notice-2021-coverage-year.

References:
  • Chase, Lauren (2019, September 16). What Are Manufacturer Copay Cards? GoodRx. Retrieved online at https://www.goodrx.com/blog/what-are-manufacturer-copay-cards/. 
  • Centers for Medicare & Medicaid Services (2020, May 7). CMS Announces Final Payment Notice for 2021 Coverage Year. Retrieved online at https://www.cms.gov/newsroom/press-releases/cms-announces-final-payment-notice-2021-coverage-year.
  • Remak, Bill (2020, May 8). On May 7, 2020, the Centers for Medicare and Medicaid Services (CMS) released its final 2021 Notice of Benefit and Payment Parameters rule. LinkedIn. Retrieved online at https://www.linkedin.com/pulse/may-7-2020-centers-medicare-medicaid-services-cms-released-bill-remak/.
  • Schmid, Carl (2020, May 7). Trump Administration Shocks Patients By Allowing Insurers to Increase Cost of Prescription Drugs. HIV+Hepatitis Policy Institute.
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, May 7, 2020

Aging with HIV Report Released

By: Brian Hujdich, Executive Director, HealthHIV

Structural Barriers to Care and Social Isolation Identified in HealthHIV's Inaugural State of Aging with HIV™ National Survey

Structural barriers to care and social isolation were identified as the most significant Issues for people aging with HIV, according to HealthHIV's Inaugural State of Aging with HIV National Survey. The survey also identified significant gaps in care coordination and a lack of comprehensive resources for people aging with HIV, complicating the provision and quality of services for this growing population. It is estimated that 70% of people with HIV (PWH) in the United States will be 50 years or older by 2030.

HealthHIV has issued a comprehensive report on the survey, which includes detailed findings and implications on care coordination. The report can be viewed at: www.healthhiv.org/pozitivelyaging. The report identifies the need for increased resources, as well as areas for improvement and best practices. The national survey covers six key areas: care coordination; HIV management; provider interaction; healthcare expenses; pharmacy usage; and aspects of living with HIV for PWH over the age of 50.

State of Aging with HIV

Key survey findings by topic include:

Care Coordination
Structural and financial barriers are negatively impacting care coordination. One quarter of respondents experience lack of convenient appointment times, long wait times, insurance coverage, and cost of care. 14% had difficulty paying for medication and 12% had difficulty paying for provider visits.

HIV Management
Over half of respondents live with at least one comorbid condition; experience depression and have high cholesterol. Although engaged in routine care, respondents indicated that when their HIV and primary care provider are the same person, they are less likely to receive treatment for comorbid conditions such as asthma, kidney disease and diabetes. 50% reported experiencing stigma, 25% reported ageism, and 24% reported homophobia when accessing healthcare.

Interactions With Providers
Three quarter of respondents have seen a HIV care provider in the last six months and over half also have seen a primary care provider in the last six months.

Healthcare Expenses
One quarter reported cost and the lack of in-network provider insurance coverage as barriers to seeking care.

Pharmacy Usage
The majority of respondents are likely to contact a pharmacist with medication issues.

Aspects of Living with HIV for PWH over the age of 50
One quarter have experienced survivor's syndrome and nearly half felt lonely or isolated within the past two weeks (at time of survey).

Struggles with lack of social support and isolation persist. One-third of respondents indicated lack of an emotional support system. Survey findings also indicate that providers may need additional training to conduct fully comprehensive assessments of the additional services PWH over the age of 50 need.
"The broader care coordination implications show that we need to leverage program activities to creatively and comprehensively respond to the health inequities that impact people aging with HIV," said HealthHIV's Executive Director Brian Hujdich. "These findings suggest that this community requires additional resources to address social support, depression and isolation. People aging with HIV still manage the burden of survivors' syndrome, stigma, and feelings of isolation, which is especially concerning in the context of the COVID-19 pandemic and the need for physical distancing."
 "The impact of both ageism and HIV stigma compounds the problem of care coordination for this community,"
said Pozitively Aging Program Manager Lisa Frederick.
About the Survey:

The national survey was conducted with 1,086 respondents from July 16, 2019 to August 12, 2019. The survey was distributed using survey monkey and no incentive was provided. The respondents were people living with HIV over the age of 50 representing 39 U.S states and Puerto Rico. The majority of respondents were lower income, 60% White, 21% Black, 12% Latino, 6% Multi-Racial with smaller percentages from Asian American, American Indian and Pacific Islander. The gender makeup was 66% gay, 22% heterosexual, 5% bisexual, 2% queer, 1% two-spirit and other 2%.

Key findings from the survey will inform the development of enhanced programs and services focused on improving care coordination for people aging with HIV.

About the Pozitively Aging Program:

HealthHIV's Pozitively Aging program is part of Gilead's Age Positively Initiative and seeks to improve access to quality services and care coordination for PWH over 50. As this community continues to grow, health outcomes can be improved and sustained for PWH over 50 by enhancing care coordination/access, health literacy, and the co-management of conditions associated with aging with HIV through data collection and medical education. Pozitively Aging offers consumer education materials to strengthen self-management of care and address health literacy challenges. The program engages consumers, HIV specialists, primary care providers, and gerontology specialists to inform these education efforts and capacity building activities.

The HealthHIV's Inaugural State of Aging with HIVTMnational survey report can be accessed at healthhiv.org. To download the full report, click here: www.healthhiv.org/pozitivelyaging.

For more information about the Pozitively Aging program, please email lisa@healthhiv.org, call 202-507-4733, or visit healthhiv.org.

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.