Affordable Care Act Marketplace Plans & Drug Benefit Design

By: Ranier Simons, ADAP Blog Guest Contributor

Healthcare insurance policy and finance are not abstract entities relegated to the arenas of political debate and Wall Street discourse. The convoluted machinations of how money flows in healthcare insurance finance affect the bank account of anyone who has ever been prescribed a prescription drug. People living with HIV are very aware of the importance of understanding how insurance operates regarding paying for expensive antiretroviral medications that cost thousands of dollars per month. 

Photo Source: Sciworthy

When choosing insurance plans, one of the most important aspects people living with HIV/AIDS (PLWHA) consider is how or if a particular plan covers their anti-retroviral (ARV) therapy. AIDS Drug Assistance Programs (ADAP) also pay close attention to drug coverage and drug pricing, given that they help provide medications to those who are uninsured as well as those who are underinsured. The Affordable Care Act (ACA) has enabled many PLWHA to access lifesaving medicines. However, the drug benefit design of many qualified health plans (QHP) participating in the ACA Marketplaces can hinder expeditious access to efficacious drugs.

A recent study examined how insurance benefit design affects antiretroviral access. The study focused on the changes in insurance coverage of Biktarvy (bictegravir/emtricitabine/tenofovir alafenamide) and Triumeq (dolutegravir/abacavir/lamivudine). These two drugs are first-line single-tablet regimens that have proven to be very effective. The U.S. Food & Drug Administration (FDA) approved Triumeq in 2014 and Biktarvy in 2018. Current treatment guidelines suggest that PLWHA start ART as soon as possible upon diagnosis, same day if possible. However, the study showed that access to novel treatments, such as Triumeq and Biktarvy, is slowed by delayed QHP coverage and benefit design.[1]

Photo Source: Rohan Khazanchi, MD, MPH | Twitter

The study assessed individual and small-group QHPs’ responses to the two new regimens. For the years 2018-2020, researchers examined coverage, cost sharing, specialty tiering, prior authorization (PA), and out-of-pocket (OOP) costs for Triumeq and Biktarvy nationally under QHP’s. Coverage refers to if a plan does or does not offer a drug in its formulary. Cost sharing refers to copays and coinsurance for drugs. A copay is a set fee patients pay for a prescription, whereas coinsurance is a percentage of a drug’s wholesale cost. Specialty tiering is the designation insurance drug formularies give to medications based on their costs. The higher the tier, the more of the costs are passed onto the consumer. More expensive drugs, such as ART, are in the higher tiers. Prior authorization is the bureaucratic process requiring healthcare providers to get pre-approval from a health plan before a drug is prescribed for the patient to qualify for payment coverage.

For 2018, 2019, and 2020, respectively, the study identified 19,533, 17,007, and 21,547 QHPs.[1] Overall, in 2018, 93% of the QHPs covered Triumeq, but only 60% covered Biktarvy. Triumeq coverage increased to 97% in 2019 and decreased to 91% in 2020. Biktarvy coverage decreased to 59% in 2019 but sharply increased to 86% in 2020. Concerning coinsurance, over the entire study period, a higher percentage of QHP’s required coinsurance for Biktarvy than Triumeq. The study also explicitly assessed coverage comparisons in EHE (Ending the HIV Epidemic Initiative) Phase I priority jurisdictions. Overall, across all three years studied, in both EHE and non-EHE jurisdictions, more QHPs covered Triumeq than Biktarvy. Interestingly, Biktarvy QHP coverage in 2020 was higher in EHE jurisdictions (90%) compared to non-EHE jurisdictions (85%). Biktarvy coverage in EHE jurisdictions increased from 74% in 2018 to 90% in 2020 due to increased coverage with coinsurance and copays. The study also found differences in prior authorization requirements. The prevalence of PA requirements for Triumeq was very low (2%, 2%, and 1% for 2018, 2019, and 2020, respectively).[1] PA prevalence was higher for Biktarvy, with 5% in 2018 and 8% in 2019. In 2020 all QHP had eliminated Biktarvy PAs except for 18 plans in Washington State.

Photo Source: HIVinfo

A multi-center, phase 3, double-blind, randomized control clinical trial of treatment naïve PLWHA showed that Biktarvy had the efficacy of viral suppression equal to Triumeq.[2,3] Additionally, it showed that Biktarvy had no evidence of treatment-emergent resistance and was better tolerated gastrointestinal due to its formulation and smaller pill size. Moreover, Biktarvy does not contain abacavir and thus does not require HLA-B*5701 testing making it a good candidate for same-day ARV initiation.[1] 

Evidence-based data showed Biktarvy to be a better candidate for first-line drug treatment for many than Triumeq. Yet, as stated previously, QHPs lagged in coverage of Biktarvy compared to Triumeq, even in EHE priority-1 jurisdictions. There were higher OOP costs given that more QHP’s required coinsurance for Biktarvy, and PA requirements were also initially more frequent for Biktarvy.

The critical takeaway from the study is that QHPs can slow the adoption of new HIV single-pill regimens by non-coverage decisions and other hurdles that limit access.[1] This does not stop at single-pill regimens. Ongoing HIV research continues to produce novel and innovative treatments such as Cabenuva and Sunlenca. Insurance companies base their coverage decisions mainly on the costs of the medications. Strident efforts are needed to create regulations to lower drug pricing. Additionally, cost-sharing measures need to evolve, such as basing patient coinsurance on post-PBM discounted drug prices instead of pre-discounted prices.[1] 

Increasing the pricing of novel and effective medication challenges ADAP’s ability to continue to help people. Additionally, prohibitive OOP costs for patients discourage medication adherence and treatment initiation. Many structural barriers to HIV treatment equality exist. Runaway pharmaceutical pricing and insurance drug coverage that is not scientifically evidence-based should not be amidst those barriers.

[1] Khazanchi, R., Powers, S., Killelea, A. et al. Access to a novel first-line single-tablet HIV antiretroviral regimen in Affordable Care Act Marketplace plans, 2018–2020. J of Pharm Policy and Pract 16, 57 (2023). https://doi.org/10.1186/s40545-023-00559-8

[2] Acosta RK, Willkom M, Martin R, et al. Resistance analysis of Bictegravir–Emtricitabine–Tenofovir Alafenamide in HIV-1 treatment-naive patients through 48 weeks. Antimicrob Agents Chemother. 2019;63(5):e02533-18. https://doi.org/10.1128/AAC.02533-18

[3] Coffey S, Bacchetti P, Sachdev D, et al. RAPID antiretroviral therapy: high virologic suppression rates with immediate antiretroviral therapy initiation in a vulnerable urban clinic population. AIDS. 2019;33(5):825–32. https://doi.org/10.1097/QAD.0000000000002124

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.  

Culture War Against ACA Scores Win

By: Ranier Simons, ADAP Blog Guest Contributor

March 23, 2023, was the 13th anniversary of the signing of the Affordable Care Act (ACA). The landmark legislation forever changed the landscape for healthcare insurance and healthcare access in the United States. About 35 million people presently have ACA-related healthcare coverage, with 21 million of those enrolled in Medicaid expansion coverage.[1] The law enabled many to obtain robust healthcare coverage who were previously uninsured or underinsured. Most importantly, while not perfect, the ACA is an effective tool to support equity in healthcare coverage and treatment. Through the ACA, participants receive comprehensive and affordable care regardless of their income or lack of.

Unfortunately, from its inception to the present day, there have been political battles over the ACA that are ideological instead of evidence-based. Politicians, judges, and media personalities continually attempt to dismantle the ACA without having the plan to replace it. Opponents of the law have found an ally in Judge Reed O’Connor, a federal judge in Texas. In 2018, Judge O’Connor ruled that the entire ACA was unconstitutional. The Supreme Court eventually defeated the ruling. Judge O’Connor has previously made rulings against the ACA’s non-discrimination provisions, contraceptive coverage requirement, and regulation of insurance provider fees in states.[2]

Photo Source: Law.com

Judge O’Connor’s latest challenge to the ACA is in Braidwood Management Inc. v. Becerra. In this case, six individuals and Christian-owned businesses claim that private health insurance coverage requirements are unconstitutional. Additionally, they argue that being required to provide coverage for PrEP under their insurance plans violates their religious beliefs and thus violates the Religious Freedom Restoration Act (RFRA).[3]

The ACA requires insurers to cover certain preventative care services without any cost-sharing by the insured. Those services will be provided for free when obtained through a provider in an insurance plan’s network. The ACA uses guidance from the United States Preventative Task Force (USPSTF) to determine the aforementioned services. The USPSTF was created in 1984 by the U.S. Public Health Service Act to improve public health through evidence-based recommendations to prevent disease and increase life expectancy.[4] Sixteen national experts on preventative medicine and primary care comprise the USPSTF. They make their recommendations based on scientific evidence with no conflicts of interest or political influence.

Photo Source: Axios

In September 2022, Judge O’Connor ruled that the USPSTF violates the Appointments Clause because the members are not appointed by the President and subsequently confirmed by the Senate; nor are their recommendations reviewed by Constitutionally specified officials. Thus, he decided that the Braidwood Management plaintiffs should not be required to pay for conventional medical insurance plans that mandate coverage of preventative services recommended by the USPSTF because the entity and its recommendations are unconstitutional. Judge O’Connor further ruled that the PrEP coverage mandate violated Braidwood’s religious freedom rights under the RFRA. Braidwood argued that paying for coverage that included provisions for PrEP made them implicit in supporting homosexuality, drug use, and sex between a man and a woman outside of marriage. At the time of the initial ruling, legal remedies had not been specified, and both sides were instructed to present briefs relating to the scope of relief. Moreover, the initial focus was explicitly on Braidwood being required to pay for plans that provided PrEP without cost sharing and the non-religious plantiffs not being required to pay for preventative services such as contraception and std testing.

March 30, 2022, Judge O’Connor ruled on the case's legal remedy. He invalidated the ACA's HIV treatment mandate of providing PrEP, stating it violated Christian employers' rights under the RFRA. Thus, the government could not take any legal action requiring the Braidwood parties and religious objectors to pay for PrEP. He went a step further, stating that any recommendations for preventative services made by the USPSTF on or after March 30, 2010, are unlawful. Effectively, this is a national block meaning insurance plans no longer must cover many preventative services for free. These services include biennial mammography screening for women aged 50-74, cervical cancer screening in women aged 21-65, colorectal cancer screening in adults aged 45-49, and PrEP. The complete list of these services is here. 

Without coverage for PrEP, it is estimated that over 2000 preventable HIV infections will occur within a year.[7] For every 10% decrease in PrEP coverage, there would be an additional 1,140 HIV infections among MSM the following year. Generic PrEP costs $30 per month, and brand-name products that don’t have generic versions can cost over $20K annually. Additionally, there are lab work and provider visits associated with the administration of PrEP. Those expenses are around two thousand dollars a year. Blocking the HIV treatment mandate would result in cost-sharing or complete denial of coverage resulting in out-of-pocket costs that those needing help cannot afford.

Photo Source: NPR

Blocking the coverage mandate for other preventative services would also have dire consequences. Lack of certain screenings means that many conditions, including cancers, will go undiscovered until late stages. This would result in many preventable diseases, decreased healthcare outcomes, including death, and increased medical costs. Such a future is in opposition to the Institute for Healthcare Improvement’s “Triple Aim”: improving the individual experience of care, improving the health of populations, and reducing the per capita costs of care for populations.[8]

Judge O’Connor’s ruling is not the final law. There will be appeals, and it could reach the Supreme Court. Presently in 2023, no plans are affected since the current coverages are in place via the contracts policyholders have with their insurance companies. Additionally, it is possible a hold will be placed on the order as it makes its way through the courts. The American College of Obstetricians and Gynecologists, in a statement, said: "Allowing personal or political bias to interfere with the practice of medicine will cause harm to our patients."[6] Unfortunately, recent policy decisions in Tennessee, New York, and now Texas seem to be setting up the harm the American College of Obstetricians and Gynecologists warns against.

[1] U.S. Department of Health and Human Services. (2022, April 29). New Reports Show Record 35 Million People Enrolled in Coverage Related to the Affordable Care Act, with Historic 21 Million People Enrolled in Medicaid Expansion Coverage. Retrieved from https://www.hhs.gov/about/news/2022/04/29/new-reports-show-record-35-million-people-enrolled-in-coverage-related-to-the-affordable-care-act.html

[2] Sneed,T. (2022, January 28). Judge notorious for anti-Obamacare rulings has another crack. Retrieved from https://www.cnn.com/2022/01/28/politics/obamacare-reed-oconnor-biden-doj-health/index.html

[3] Sobel, L., Ranji, U., Pestaina, K., Dawson, L., Cubanski, J. (2022, October 26). Explaining Litigation Challenging the ACA’s Preventive Services Requirements: Braidwood Management Inc. v. Becerra. Retrieved from https://www.kff.org/womens-health-policy/issue-brief/explaining-litigation-challenging-the-acas-preventive-services-requirements-braidwood-management-inc-v-becerra/

4) USPSTF. (2021). USPSTF: An Overview. Retrieved from https://www.uspreventiveservicestaskforce.org/uspstf/about-uspstf/task-force-resources/uspstf-overview#:~:text=The%20U.S.%20Preventive%20Services%20Task,prevent%20disease%20and%20prolong%20life.

5) Braidwood v. Becerra, 2022,  https://storage.courtlistener.com/recap/gov.uscourts.txnd.330381/gov.uscourts.txnd.330381.92.0_2.pdf

6) Pierson, B. (2023, March 30). U.S. judge blocks Obamacare coverage mandate for some cancer screenings, PrEP. Retrieved from https://www.reuters.com/business/healthcare-pharmaceuticals/texas-judge-blocks-obamacare-coverage-mandate-prep-cancer-screening-2023-03-30/

7) Klein, H. (2023, March 29). PrEP court ruling could lead to thousands of preventable HIV cases. Retrieved from https://www.ajmc.com/view/prep-court-ruling-could-lead-to-thousands-of-preventable-hiv-cases

8) IHI.(2023) The IHI Triple Aim. Retrieved fromhttps://www.ihi.org/Engage/Initiatives/TripleAim/Pages/default.aspx   

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.  

Policy Recommendations & Action: Transgender Advocacy

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

As advocates, we are asked frequently about the concrete steps we would like to see from our industry partners. Effective advocacy requires actionable items, clear direction, and tangible benefits for affected communities. With this in mind, we have established a few recommendations for our industry partners to consider when seeking to do “the next right thing” for Transgender populations. We chose to highlight Transgender and Gender Non-Conforming populations due to disparate impacts in health this population faces.

While reviewing, industry partners may notice certain common principles: leverage of positions of power in advocating for governmental recognition of personal dignity, protections of individual right to access to care, “centering” affected populations and population needs in funding and proposals, “filling” gaps in necessary medical knowledge with regard to the specific needs of affected population, partnership with smaller entities, more closely connected to or run by affected populations, and an introspective evaluation of our own operations. After all, leading by example empowers and invites other partners to join us in best practices.

Effective advocacy may require precision in action; it also requires broad understanding outside of traditional scope of one’s organization. In understanding the variety of socio-economic determinates in health, to effectively close the gaps of disparities, we must also work to affect change in areas outside of health.

Policy Recommendations and Action: Transgender Advocacy

• Public comment on rulemaking:
• Religious Freedom/Conscience: “Religious freedom” is currently being used as a beacon call for restricting the rights and/or protections of LGBTQ persons. While not always specifically naming Transgender persons, the Trump Administration has preferred to use language regarding “medical sterilization”, a coded effort targeting transition related care such as cross-sex hormone replacement therapy and gender confirmation surgeries. Oppose these changes.
• Section 1557: The Trump Administration has chosen to not defend the reading of Section 1557 of the Affordable Care Act as interpreted by the Obama Administration. Government entities are enjoined from enforcing protections on the basis of gender identity and pregnancy history due to the Northern District of Texas ruling in December of 2016. The U.S. Department of Health & Human Services and U.S. Department of Justice has indicated the agencies will re-write the rule to exclude these protections. Oppose these changes.

• Amicus Briefs: 
• Employment and other rights as described under the Civil Rights Act ("CRA")of 1964: Case law has begun to recognize the inclusion of gender identity as covered by the prohibition of sex based discrimination in the CRA. The Obama Administration adopted an interpretation stemming from the Price Waterhouse decision on sex stereotyping: “but for” the sex assigned at birth/biological anatomy of a person, entities would respect the rights and protections of a person as their self-identified gender. The Trump Administration is seeking to codify into case law a strict reading of the “sex” provisions of the as “anatomical sex” as opposed to gender identity. Oppose these arguments where possible via amicus briefs and sign-on letters.

• Funding and Programing:
• Transgender specific organizations are often in competition for grant funding with larger LGBTQ organizations: Prioritize “by/for” Community Based Organizations ("CBOs") and projects when issuing Requests For Proposals for Transgender specific grants.
• Expand funding in RFPs for Transgender-specific grants: Often, Transgender-specific grants are ambiguous in nature and limited in funding. Ensure each Transgender-specific grant RFP is large enough for 1 FTE and deliverables has measurable impact on Transgender populations. Consider seeking a Transgender consultant to help draft these grant RFP.
• Ad Hoc Funding: Seek out Transgender-specific CBOs and ask what services they lack funding for.
• Fully fund full-time and part-time internships: Transgender persons often lack formal education requirements for employment, most typically due to fears of harassment and increased poverty experiences. As a result, it is common for Transgender persons to seek “underground economy” work. Funding internships exempt from formal education requirements and accounting for previous work experience and lived experiences would provide an opportunity to reduce poverty among Transgender persons, ensure health insurance coverage, and position Transgender persons to build formal and meaningful work experience while also assisting funded entities on a variety of projects.
• Fund Transgender-specific depression coping skills programming.

• Internal Competencies:
• Ensure local offices receive Transgender cultural competency training annually: Hire “by/for” organizations local to each office. This is especially important for community liaisons and sales staff.
• Hire Transgender persons: Estimates show Transgender persons are 1-3% of the population. Perform an internal audit and ensure internal employment statistics reflect this population.
• Ensure company sponsored health insurance covers gender affirming care: Many insurance carriers impose burdensome bureaucratic barriers to coverage approval for gender affirming care; ie. Gender marker changes on government identification or name changes as evidence of “living as the desired gender”. To fulfill either of these, requires a court order. Making gender affirming care the only type of standard medical care that requires a court order on a consistent basis. Ensure employee plan offerings do not impose such barriers.

• Lobbying:
• Lobby on behalf of Transgender rights protections legislation: Both on the state and federal level.
• Lobby state insurance regulators to standardize policies for gender affirming care: Few states have a codified avenue for complaint when an insurance company refuses to cover or imposes burdensome requirements to gender affirming care coverage.
• Lobby for Federal Qualified Health Center ("FQHC") infrastructure funding: Many Transgender persons rely on FQHC’s for their gender affirming care. Unfortunately, the federal government has not issued physical infrastructure support funding for FQHCs in 4 years. Work to ensure FQHCs are appropriately funded.
• Lobby for mental health funding in schools: Limited to no funding is provided to include development of coping skills in children. Transgender children or children exploring their gender identity are prone to depression due to social and peer stigma. Work with education lobbying efforts to ensure funding and programmatic develop of effective empathy building and coping skills building.

• Invest and research:
• Invest in and include transgender persons in research for product development; including but not limited to clinical study, marketing, and Transgender-specific research. Develop research ethics protocols for including Transgender persons in clinical research. Ensure studies include socio-economic adherence barriers among Transgender populations and meaningful strategies to overcome.
• Areas of interest may include hormonal impacts on mental health, efficacy of products among Transgender populations, hormone replacement therapy impacts on efficacy of products, and more.

• Build Partnerships:
• With Transgender-specific CBOs and Transgender serving CBOs.
• With lobbying entities working on behalf of Transgender persons
• With patient advocacy organizations working at the intersections of health disparities affecting Transgender persons; ie. HIV, STIs, addiction, etc.

Industry partners interested in learning more about implementing Transgender advocacy policy recommendations and action can contact us at info@adapadvocacyassociation.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.

Trump Administration Seeks to Re-Write Portions of 1557 Final Rule

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

When the Patient Protection and Affordable Care Act ("ACA"), or commonly called Obamacare, passed in 2010, of hot but limited debate was the potentially expansive nature of Section 1557 of the legislation. Considered to be a broad expansion of non-discrimination protections in health care, Section 1557 “prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs and activities.” Section 1557 is the first federal civil rights law to prohibit discrimination on the basis of sex in covered health programs and activities.

Despite citation of enforcement of this provision since 2010, the Obama Administration would wait until September 15, 2016 to issue a Final Rule outlining exactly how Section 1557 should be applied. Of particular note in the 380+ page rule, the U.S. Department of Health & Human Services ("HHS") gave guidance on translation service requirements, disability accommodation requirements, quality of care with regard to pregnancy history, and classified transition related care for transgender people as care protected on the basis of sex. HHS would cite certain legal precedent, including the Supreme Court decision in Price Waterhouse v. Hopkins (1989) and subsequent case law pertaining to “sex stereo typing” as it relates to gender identity and expression. In a somewhat surprisingly broad application, HHS’ Final Rule not only stated ability for government enforcement of Section 1557 but the right of private action by aggrieved patients. In short, patients were being extended the opportunity to sue certain private health care and insurance providers for refusing care to transgender people. To say this was a “big deal” would be an understatement. Transgender advocates went WILD with joy and celebration of a major win.

Vast portions of the Final Rule were to go into effect on January 1, 2017. On December 31, 2016, at the behest of five states and a group of Christian identified medical providers (including dentists…I’m not kidding), Judge Reed O’Connor of the U.S. District Court for the Northern District of Texas issued an injunction against implementation of portions of Section 1557 regarding transgender patient care protections and abortion related care. Judge O’Connor has a nasty history of him issuing rulings that marginalize LGBTQ Americans. This case, Franciscan Alliance, Inc. et al v. Burwell, was no different. The injunction prohibited the government from implementing and enforcing the Final Rule. It did not, however, prevent patients from seeking suit should they experience discrimination.HHS would reverse the position of defending the Final Rule after the administrative transitioned over to Donald J. Trump. In July, 2017 HHS submitted a brief seeking a stay while it “reconsiders” the policy, indicating an intention by new HHS leadership to walk back the nature of the protections offered by Section 1557. The stay was granted. It is of important note that HHS’ Office of Civil Rights is now lead by Roger Severino, an appointment widely opposed by equality organizations on the basis of Severino’s well documented and very public statements in support of discrimination against LGBTQ people.

The change has been haunting transgender advocates for almost a year. And here’s why:

• Broadly, prior to the ACA, transgender identity was considered a “pre-existing condition”. The prohibition of refusal of coverage on the basis of a pre-existing condition meant transgender people, for the first time, could not be refused coverage at the application process. Still, transgender people commonly faced notation that plans did not cover transition related care. The Obama Administration's version of the Final Rule explicitly outlined that insurance companies could no longer continue the practice of excluding transition related care, impose burdensome requirements to qualify for coverage through discriminatory plan design, or impose burdensome appeals processes due to automatic denials of care because of a “sex mis-match” in approval systems. While HHS was not prescriptive in telling insurance companies how to address these issues as the most common barriers to coverage transgender people face, the agency was clear: “care delayed is care denied”.

• Another unfortunately common experience transgender people faced and continue to face is “transgender broken arm syndrome”, a situation where a transgender person seeks routine medical care unrelated to their transition care but receives less than standard quality of care due to bias of providers. A real-life example I encountered in my advocacy includes a transgender woman seeking emergency care for trouble breathing. The patient was asked about her current medication use, including an estrogen, wherein she disclosed her identity as transgender. She was given two breathing treatments and sent home. The patient was not given a chest x-ray or other diagnostics to determine appropriate care. The patient returned the emergency room a few days later with pneumonia, a diagnosis she only received after having to insist on a chest x-ray. The Final Rule under the Obama Administration considered this type of treatment, no matter the setting, to be discriminatory in nature and a violation of the protections afforded under Section 1557.

• According to the 2015 US Trans Survey, a work product from the National Center for Transgender Equality, 25% of transgender people experienced being denied routine or transition related care by their insurance provider, more than half of those seeking coverage for transition-related surgery were denied, and 25% of those seeking coverage for hormone replacement therapy were denied. The same survey also found that 33% of respondents who saw a healthcare provider experienced refusal of care, being verbally, physically, or sexually assaulted, or having to teach their providers about transgender people in order to receive appropriate care. Because these experiences are known among this community, 23% of respondents did not see a medical provider when the needed to out of fear of being mistreated. These findings are particularly worse for transgender people of color. Compounding fears of discrimination, potential refusal of coverage, and discrimination in employment, 23% of transgender people did not seek care when they needed it because they could not afford care.

• In 2011, the Centers for Disease Control & Prevention ("CDC") revised HIV surveillance to include transgender people as a target population. In 2017, the CDC acknowledged transgender people as underserved and interventions for this community as understudied. The 2015 US Trans Survey found a self-reported rate of HIV among transgender populations of 1.6%, or FIVE TIMES that of the general population, with a self-reporting rate of 19% among Black transgender women.

• In October 2017, HHS issued a new Conscience Rule, specifically targeting abortions, assisted suicide, and transition-related care. While not even daring to mention the word “transgender”, the agency couched the discriminatory Final Rule under the language of “sterilization”. Transgender advocates rightly fear the impact of codifying sanctioned discrimination in health care under the current administration. Rolling back the reach of Section 1557 as a protective provision would open the flood gates of claims of “religious liberty” to deny care and coverage to transgender people.

HIV service organizations and advocacy groups hold a unique opportunity to advocate for this highly marginalized intersection of HIV-positive, transgender people. As transgender advocacy organizations take to legal action to slow the tide of discriminatory action by the current Administration, HIV advocates would do well to seek ways to support the fight ahead, institute model policy for both transgender clients and employees, and work to provide a backbone of social and medical support for this community.

From community based agencies to State AIDS Drug Assistance Programs, identifying and educating legislators to advocating for expansive formularies, covering transition related HRT in both Ryan White Part A and B (ADAPs), the power of partnered advocacy cannot be understated. We cannot “get to zero” without addressing the needs of transgender people and we cannot address those needs without strong protections, combating systemic discrimination against transgender people.




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.

Rx Drug Coupon Concerns Pit Prices Against Patients

Guest Blog By: Marcus J. Hopkins, Blogger

Drug manufacturer coupons have increasingly become a popular method of reducing the price consumers pay for their medications. Insurers, Pharmacy Benefits Managers (PBMs), and other payors, however, argue that these cost saving tools actually drive prices upward and result in patients choosing expensive brand name drugs over less expensive generic alternatives, essentially costing the payors more money, in the long run. As a result, some payors are taking the extraordinary step of no longer counting drug coupons toward patients’ out-of-pocket costs and deductibles, meaning that once patients use a coupon, they’ll be left to pay the remaining cost of the drug out-of-pocket.

When looking at how and when these coupons are used, however, Health Affairs = a leading journal in health policy thought and research – found that just 21% of coupons used in the 200 highest expenditure drugs of 2014 had a direct generic substitute, while another 28% had an “imperfect substitute.” The remaining 51% of drug had either no generic substitute or only branded alternatives (Van Nuys et al., 2018).

For patients living with HIV (and, more recently, Hepatitis C), the past decade has been revolutionary in terms of the medications that have been made available to treat the disease. In 2007, most patients began treatment using a two- or three-pill regimen with various storage requirements. A year earlier, the first single-pill regimen, Atripla (Gilead), was approved by the FDA for the treatment of HIV.  In 2017, virtually patients begin HIV treatment with a single-pill regimen. The sad reality, however, is that there are no generic substitutes available in the United States for HIV drugs, and manufacturer coupons that reduce co-pays for them play a vital role in determining whether or not patients can afford the lifesaving medications they need.

“Consumers with life-threatening conditions are caught in the crossfire of an ongoing battle between insurers and drug companies over drug pricing. No matter who wins the battle, the casualties will be the patients, taxpayers, and the general public,” says Eddie Hamilton of the Columbus, Ohio-based ADAP Educational Initiative.

Photo Source: Consumer Reports

He is correct. In the rush to lower expenditures in the post-Affordable Care Act (ACA) market, insurers have increasingly begun weaponizing their drug formularies – the list of drugs payors will cover and for how much – against manufacturers to force lower pricing agreements, all of which are confidential under existing Trade Secrets laws. Placing brand name drugs in higher-cost tiers has been a relatively ineffective weapon when it comes to lowering overall prices, but has been an effective barrier to treatment for many patients living with HIV and other chronic illnesses for which there are few, if any, generic and/or effective alternatives.

This latest salvo against drug manufacturers will ultimately end up hurting consumers more than it will lower expenditures for insurers.

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. 

The Healthcare We’ve Been Waiting For?

By: Sue Saltmarsh, Executive Director, Demand Universal Healthcare

On September 13th, U.S. Senator Bernie Sanders (I-VT) stood surrounded by a number of his Senate colleagues to unveil the Medicare for All Act, or the Universal Medicare Program as it’s called in Title I, S. 1804. Never mind that most of those Democrats had fallen all over themselves to surf the wave of the people’s vociferous demand for single-payer healthcare instead of getting wiped out by it. But the purpose of this blog is to examine and assess the actual legislation, so on to it.

Simple facts first – if you are an H.R. 676 (the Expanded & Improved Medicare for All Act) purist, you will not be satisfied with this bill. If you are an Affordable Care Act (ACA) apologist, you should like it since it addresses most of the abject failures and hard lessons of the ACA. And if you’re living with a chronic, sometimes fatal disease, terrified of losing your Medicaid or unaffordable ACA insurance, not to mention having to deal with worsening illness as medications become harder to come by if you haven’t won the lottery lately, the text of the bill will give you renewed hope that you might actually live long enough to see the end of Trump!

The bill is NOT perfect, but it is a long way ahead of Clintonesque incrementalism and far closer to the gold standard of H.R. 676 than any Senate Democratic effort to date. There is cautious optimism within the single-payer activism community. We’ve seen what the legislative process can do to a good bill and won’t breathe easy until it’s not just passed, but implemented, but we are, to varying degrees, behind it.

Photo Source: inquisitr.com

What it does

Let’s start with what it achieves. “Every individual who is a resident of the United States is entitled to benefits for health care services under this Act.” Note “residents,” not “citizens” (though the Secretary of the U.S. Department of Health & Human Services (HHS) has the power to determine the meaning of “resident”). Of course, Republicans will blast this with a “they take our jobs; now they’ll take our health care!” argument, one we should not be polite about debunking. And we should be prepared for losing it if by changing to “citizens” we get the Republican votes to pass it. Remember, if we do our jobs in 2018, there will be a Democratic Senate and amendments can be made.

Like H.R. 676, it also includes in Section 201 its list of benefits which are more comprehensive than the ACA, including dental, vision, and hearing. It also states in Sec 201(a)(4), “Prescription drugs, medical devices, biological products, including outpatient prescription drugs, medical devices, and biological products.” More about this later.

Specific language protecting reproductive rights, both in the non-discrimination Section 104 and the Sec. 201(a) list of benefits-- “RESTRICTIONS SHALL NOT APPLY. Any other provision of law in effect on the date of enactment of this Act restricting the use of Federal funds for any reproductive health service shall not apply.” Further, the bill would forbid discriminating against an eligible provider on the grounds that they provides abortion. This may set off a Republican push to refocus repeal efforts on Roe v. Wade, but I say it’s well past time for progressives to reach out to Libertarians and join forces to put our collective foot down and say, “NO MORE!” to the anti-choice zealots! Why have we allowed them to dictate their ideological public policy over established law anyway? Another issue we can’t afford to be courteous about.

Speaking of choice, S. 1804, like H.R. 676, will give us the freedom to choose our doctors, other providers, and facilities with no concern about networks or referrals that need “prior approval.” That truly is choice, contrary to the mythical choice Republicans have claimed their draconian repeal-and-replace efforts would include.

Another major single-payer goal is included in the provision that the system will be publicly funded through a variety of options, including a modest tax increase and the elimination of “escape hatches” for the wealthy and corporations to avoid paying anywhere near their fair share. This will be done via the establishment of the Universal Medicare Trust Fund where money from now obsolete healthcare programs (Medicare, the Federal Employees Health Benefit Program, TRICARE, etc.), the tax increases, fees, gifts, and bequests will be deposited and expenses paid.

For the howlers who accuse Bernie of handing out herds of fantasy “ponies” with no plan on how to pay for them, all they have to do is read his 5-page paper Options to Finance Medicare for All (available at https://www.sanders.senate.gov/download/options-to-finance-medicare-for-all) to see that he has thought, researched, and consulted about how to finance his plan and found many ways to do it fairly, though politicians of either party won’t like it because it will require them to pay more while we worthless, lazy “takers” out here will finally catch a break.

For those who worry about the current employees of the insurance industry, first, insurance will still exist so not all jobs will be lost. Then Section 601(4) provides 1% of the entire healthcare budget for up to five years from when benefits become available for programs “providing assistance to workers who perform functions in the health insurance system and who may experience economic dislocation as a result of the implementation of the Act.”

A few other goodies:

• Section 802 provides for repeal of COBRA continuation coverage requirements under ERISA
• Continuity of care is a priority in every section dealing with actual care, treatment, benefits during transition, etc.
• Section 901(2) provides that no reevaluation of the Indian Health Service shall be done without consultation with tribal leaders and stakeholders
• Section 1014 eliminates the 24-month waiting period for Medicare coverage for disabled individuals. 

Photo Source: Gerald Friedman 

What it doesn’t do

There are several major problems with the bill, the first of which is that long-term care is not covered under S. 1804 like it is in H.R. 676. Here, it would be covered by Medicaid, thus keeping Medicaid operating instead of returning the money spent there to the healthcare trust, as well as perpetuating the trap of people, especially families, having to live in poverty in order to qualify for Medicaid. This will be one provision that activists will focus on.

The contradiction of prescription drugs being covered as per the list of benefits is confusing when, in Section 202 “No Cost-Sharing,” there’s an exception for which “the Secretary may set a cost-sharing schedule for prescription drugs and biological products, provided that (i) such schedule is evidence-based and encourages the use of generic drugs; (ii) such cost-sharing does not apply to preventative drugs; and (iii) such cost-sharing does not exceed $200 annually per individual adjusted annually for inflation.”

Much is being made of drugs not being covered, but perhaps we should take a breath and put some hope in that little word “may” – the Secretary may set a cost-sharing schedule…but he or she doesn’t have to. Of course one like Price would, but once again, if we elect a president with a progressive agenda, his or her Cabinet would be less likely to include a Secretary of Health & Human Services who would want to bring back cost-sharing.

It also allows for investor-owned, profit-driven facilities such as MRI and imaging clinics, labs, and rehab facilities to continue to operate and to increase profits for their investors by raising prices, performing unnecessary and/or excessive testing and procedures, and generally propping up the idea of healthcare as a commodity.

Perhaps worst of all, considering what we’ve learned with the ACA, is the four-year time period set for full implementation. Historically, both here with Medicare and abroad with different countries’ universal systems, implementation has been done all at once without today’s technology (within a year usually). Phasing it in over four years only eats up cost savings we’ll need to help fund it, as well as preventing early proof of efficacy. It also provides time for things to go wrong or to be sabotaged, giving the long knives of the opposition’s propaganda an opportunity to carve it up as they have the ACA.

Pages 65 through 95 are devoted to the transition period between passage of the law and full implementation. The Medicare buy-in concept is proposed as the appropriate way to shift from the mess we have now to the Universal Medicare Program – acronym UMP which is exactly what we’ll need to get through the “game” of this extra four years of complication. I don’t know what exactly Bernie’s strategy was in devising this, but I do trust that he has one and knowing him, it involves foresight, a rare and exotic asset in a politician, but one he has boatloads of.

Conclusion

I don’t know that I and Demand Universal Healthcare have reached a final conclusion on S. 1804. We, too, are cautiously optimistic and it’s easy to see the immediate relief and hope this would bring to the millions of people who right now are desperately trying to stay alive and well despite what feels like a deliberatively punitive obstacle course of barriers set up by people who have not yet been in the shoes of the sick or the impoverished.

For the HIV/AIDS community, this could bring a whole new color to the tapestry of living with HIV and all that comes with it, physically, mentally, emotionally, financially, and socially. The lofty goals of the National Strategy could finally be realized as “test and treat” became the normal, easy course of events. The great work of the ADAP Advocacy Association could continue in efforts to make access to all drugs, brand names included, a priority as more new drugs come down the pipeline and generics become ineffective compared to the new ones.

I have always been a realist. I never wanted a pony and I don’t now. The Right is offering us a dark horse that will eat everything in sight and then kick down the barn and I’m certainly not buying that. Bernie isn’t Merlin and yet he holds at least this idea that could become magic. And I’m willing to work to see that it gets a chance.


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.

Trump's Proposed Federal Budget Puts Bullseye on People Living with HIV/AIDS (and many other chronic conditions)

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

The executive budget — which is mandated by federal law to be submitted by the President of the United States to Congress — is rarely taken seriously because the legislative branch typically adopts a federal budget that does not come close to resembling the budget proposed by the executive branch. That said, it does signal the President's priorities for the coming year. Sadly, President Donald J. Trump's proposed budget makes clear that people living with HIV/AIDS (among many other chronic health conditions) aren't among his priorities.

The ADAP Advocacy Association was quick to condemn Trump's proposed budget via Twitter @adapadvocacy.

There is an emerging pattern with Trump, which started during the presidential primary and continued throughout the general election...and now into his presidency. He routinely makes statements that completely contradict one another, and his proposed budget continued that trend.

How?

Trump's budget for the U.S. Department of Health & Human Services ("HHS") included legislative language relevant to the reauthorization of the Ryan White CARE Act, which is technically due for an update. The language reads:

"The Administration looks forward to working with Congress to reauthorize the Ryan White program to ensure that Federal funds are allocated to address the changing landscape of HIV across the United States. Reauthorization of the Ryan White program should include changes to the funding methodologies for Parts A and B to ensure that funds may be allocated to target populations experiencing high or increasing levels of HIV infections/diagnoses, such as minority populations, while continuing to support Americans that are already living with HIV across the nation. African Americans, for example, account for a higher proportion of new HIV diagnoses, those living with HIV, and those ever diagnosed with AIDS as compared to other races/ethnicities. The new Ryan White authorization should allow for resources to be focused on populations with disproportionately high rates of new infections/diagnoses."

Yet, that same budget called for draconian funding cuts to numerous federal programs specifically designed to assist people living with HIV/AIDS (including some authorized under the very same Ryan White). Among them:

• Eliminating $34 million for AIDS Education and Training Centers
• Eliminating $25 million for Special Projects of National Significance
• Reducing $13 million in funding for Rural Outreach Grants (19.05% decrease)
• Eliminating $42 million for Rural Hospital Flexibility Grants 
• Reducing $7 million in funding for Telehealth (41.18% decrease)
• Reducing $9 million in funding for State Offices of Rural Health (90% decrease)
• Reducing $186 million in funding for HIV/AIDS, Viral Hepatitis, STIs and TB Prevention (16.61% decrease)
• Reducing $1.3 billion in funding for Social Services Block Grant (78.69% decrease)

The budget also calls for flat funding for many other HIV-specific programs, including the AIDS Drug Assistance Programs (ADAPs) at $899 million. That might be acceptable under "normal" conditions, but the President and the Republican-led Congress are simultaneously trying to rollback numerous protections provided under the Affordable Care Act ("ACA") — such as Medicaid expansion, and Essential Health Benefits. It includes significant cuts to programs authorized under the National Institutes of Health ("NIH"), as well as programs providing mental health services, housing assistance, and addiction treatment.

Trump's budget has been universally denounced by the HIV/AIDS and Viral Hepatitis communities, as noted herein:

• Ken Bargar, Co-Chair, Florida HIV/AIDS Advocacy Network (FHAAN): "Somewhere the President's advisors failed him. These are budget cuts to peoples' lives, their medications, their care and their shelter. As advocates, we cannot allow this budget to get any traction or legitimize it in any way. Congress appropriates our country's spending and that's were we should put our efforts. Let's let every Member of Congress know we won't stand for an administration that is willing to kill it's own people."
• Michael Ruppal, Executive Director of The AIDS Institute: "The country has made great progress in the fight against HIV/AIDS and STDs, but if these cuts are enacted, we will turn back the clock, resulting in more new infections, fewer patients receiving care, and ultimately, more suffering from diseases that are preventable and treatable."
• William E. Arnold, President & CEO of the Community Access National Network: "The president’s budget fails to meet the rising tide of viral hepatitis at a time when we’re on the cusp of seeing a sharp rise in new Hepatitis C infections. Flat funding HCV programs, while also cutting key HIV-related programs will prove problematic as we attempt to address the growing number of individuals co-infected with both HIV, and HCV."
• Jesse Milan, Jr., President & CEO of AIDS United: "We have seen historic decreases in the number of new HIV infections over the past six years because of sustained investments in prevention, and we have thousands of HIV positive Americans who have yet to achieve viral suppression through treatment programs. By cutting funding, the work we have done will be reversed, and all the work left to do will falter and put the health of our nation at risk."
• Ryan Clary, Executive Director of the National Viral Hepatitis Roundtable (NVHR): "President Trump’s assault on the health care system through his unconscionable cuts to Medicaid and other vital safety net programs will cause severe harm to people living with and at risk for hepatitis B and C. If enacted, the result will be continued alarming increases in hepatitis B and C infections, high numbers of individuals unaware of their status, and needless death and suffering due to lack of access to care and treatment. NVHR calls on Congress to reject this budget immediately and work together to pass an appropriations bill that expands access to quality health care for all and increases badly needed funding for the Division of Viral Hepatitis at CDC."
• Murray C. Penner, Executive Director of the National Alliance of State & Territorial AIDS Directors (NASTAD): "Together we will fight these cuts at every stage of the appropriations process. We need to protect these programs that provide life-saving treatment for those living with HIV and work to prevent the spread of HIV and STDs. We trust that Congress will agree and recognize that these cuts are harmful, short-sighted, and will damage our nation's public health infrastructure."
• Edward Hamilton, Executive Director of the ADAP Educational Initiative: "The administration’s proposed budget cuts across multiple programs will set back the gains that have been made in domestic and worldwide HIV epidemics 20 years. With the proposed changes in Medicaid and the Affordable Care Act, ADAPs nationwide will collapse due to the unprecedented strains on their budgets from rising drug costs coupled with forecasted increased premiums."

People living with HIV/AIDS, as well as viral hepatitis and other chronic conditions, don't deserve to have a bullseye on them. Trump's proposed budget would fail our nation's most vulnerable and neediest people, and as such, Congress should ignore it.

Photo Source: GalleryHip.com

The President's budget can be viewed online at https://www.whitehouse.gov/omb/budget/.

AHCA Passed the House Today; Do Not Panic

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

The American Health Care Act ("AHCA") is not the law of the land...but rather it still is the Affordable Care Act ("ACA") governing our nation's healthcare framework. Let’s preface this fact with the message advocates have been stumping for months: stay vigilant, stay active, and stay on top of your elected representatives. For policy “wonks” and advocates assessing how potential legislation affects the American public, policy impact matters just as much as the political environment.

The American Health Care Act passed the U.S. House of Representatives on the narrowest of margins at 217-213. Twenty Republicans voted “no” on deep concerns of both negative impact on access and quality of care, and due to their seats being vulnerable in the 2018 midterm election (Roll Call, 2017). This vote took three months, one failed vote earlier this year, and days of “arm twisting in the cloak room” to make it happen. For the culture of the House, it is somewhat extraordinary in modern times. Now the legislation rests in the hands of the U.S. Senate.

Photo Source: C-SPAN

The Senate, while subject to more of the weight of Presidential politics, is a different beast entirely (Washington Post, 2017). Presidential politics plays both in favor for those Senators aligned with the President and against those from contentious states due to vulnerability of the seats. With a narrow Republican majority in the Senate, the coming months will see the divisions of the House amplified and thus weakening the possibility of the AHCA in its current form (or any form for that matter) passing the Senate. Additionally, once a Congressional Budget Office “score” is available, the Senate parliamentarian must assess if the bill meets the requirements of the “Byrd rule” as the AHCA is a “reconciliation” measure. Amendments added to the bill as it moves through the Senate committees will further change the CBO score and may make passage even less likely.

Among topics of concern with the bill are popular ACA provisions like consumer protections regarding pre-existing conditions, annual and lifetime limits, and the ability for children to stay on their parents’ coverage until the age of twenty-six. Less popular, though still maintaining wide support is the Medicaid expansion. The AHCA weakens these provisions by giving states the option to “opt out” of Essential Health Benefits, attacking Community Health Ratings, and forming “risk pools” for people with pre-existing conditions. Of note, independent analysis has shown that to adequately fund state risk pools, the AHCA would need to provide for $25 billion of funding. Currently, the AHCA only offers $8 billion over the course of 5 years. The ACA provided for $5 billion and ran out of funds at the 3rd year. The AHCA also structures “punishments” for those who experience lapses in coverage and older Americans. Combining these facts with substituting current subsidies with tax credits, people will face greater likelihood of lapse in coverage and increases in rates due to being unable to afford coverage in the first place. All while cutting funding and adding caps to state Medicaid programs.

Medicaid funding cuts are of special note as Medicaid expansion has eased the burden of other assistance programs like state AIDS Drug Assistance Programs, shortening waiting lists for services, and providing direct and continuous care opportunities for the most vulnerable of the American public.

The aforementioned issues will continue to be the center of the debate on the AHCA and why the CBO has scored the AHCA to cause tens of millions to lose coverage over projected 10 years following implementation.

Differing views in the Senate that label the health care programming and policy as “entitlement” will compete strongly with the attitudes of moderate Republicans that the government should provide protections and an avenue of care for their constituents and consensus will be exceptionally difficult to find. What’s likely to bring moderates on board will alienate Libertarian-minded Republicans, and vice versa. Democrats are expected to behave as a “blue wall” and vote as a caucus against the AHCA. The two Democrat Senators to watch will be Joe Manchin (WV) and Heidi Heitkamp (ND), as the most likely to indicate if the AHCA may gain even a single blue vote and thus is altered enough to gain a moderate majority.

Photo Source: trofire.com

The best way for constituents and advocates to make their voices known is, and will always be, to call their elected representatives offices, both at home and in DC, show up to town hall meetings, and take action with advocacy organizations aligned with their values.

You can find your Representative’s contact information here: http://www.house.gov/representatives/find/.

You can find your Senator’s contact information here:
https://www.senate.gov/senators/contact/.

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. 

Despite Trump's Troublesome Policies, HIV Advocacy Must Remain in Motion

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

Earlier this year, we highlighted a decade of accomplishment achieved by the ADAP Advocacy Association since the organization's inception in 2007. Unfortunately, there is little time to celebrate because so much uncertainty — and yes, fear — exists over some of the troubling policies being put forth by the Trump Administration, and how they could potentially impact people living with HIV/AIDS. For that very reason, HIV advocacy must remain in motion!

The ADAP Advocacy Association has long contended the Affordable Care Act (ACA) is far from perfect, but it would be a mistake to ignore how the law has expanded coverage for low income and disadvantaged Americans. In fact, according to FactCheck.org nearly 20 million Americans have gained access to health insurance thanks to the ACA. There is no fake news behind that number!

Affordable Care Act Medicaid Expansion; KFF.org

Medicaid expansion — which was authorized by the ACA — had a lot to do with the dramatic decrease in the number of people uninsured in the United States. Many people living with HIV/AIDS benefited from Medicaid expansion, and their ability to access timely, appropriate care and treatment actually saved the taxpayers money. That's not to suggest that other negative, unintended consequences haven't emerged since the ACA's passage — including insurance discriminatory design with extremely high co-payments for anti-retroviral medications, adverse selection limiting access to care, or rising premiums and cost-sharing. There is also no fake news behind these facts, either!

Repeal? Replace? Repair? It is hard to know the future of the current ACA, but the Republican plan...as it currently exists...is bad for people living with HIV/AIDS. There is little debate over that statement. In fact, four Republicans governors — Snyder of Michigan, Kaisch of Ohio, Hutchinson of Arkansas, and Sandoval of Nevada —who actually favor the ACA's repeal have come out against the GOP-sponsored American Health Care Act, as it is known. Why? Because they recognize the important role Medicaid expansion has played for the people living in their respective states.

Ohio Governor John Kasich has voiced concerns about
repealing the Affordable Care Act; The Atlantic 

People living with HIV/AIDS haven't been well-served by the hyper-partisanship that has swept over the nation's capitol in recent years, especially with respect to the ACA. One political party buried its collective head in the sand and ignored the law's flaws, while the other political party obsessed over repealing the law without a viable alternative to replace it. Blame can be placed at the feet of both the Democrats, and the Republicans.

But rather than trying to score political points or rehash political talking points, people living with HIV/AIDS are making their voices heard loud and clear. They are trying to be part of the solution by engaging in HIV advocacy in motion...whether is activism via social media, or the National HIV Call-In Day (which was held on March 21st), or the countless sign-on letters being sent to Congress. It is encouraging that it is happening at the national, state, and local levels.

The ADAP Advocacy Association, for its part, has a robust schedule of events and projects planned for the current year. They include:

• AIDS Drug Assistance Program Regional Summit in Raleigh, North Carolina on April 14th
• 10th Annual Conference - "Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump" in Washington, DC on September 22nd - 23rd
• PASWHA Webinar Series on "Linkages to Care: Promoting Access to Care & Treatment for People Living with HIV/AIDS"

Scholarships are available for people living with HIV/AIDS who wish to participate, so that the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion. The webinar series will include the following topics:

• Wednesday, May 31st – Plugging the Treatment Gap: Navigating Patient Assistance Programs
• Wednesday, June 28th – Housing is Healthcare: Linking Stable Housing & Medication Adherence
• Wednesday, July 26th – Transgender Healthcare: Removing Barriers to Healthy Cultural Expectations
• Wednesday, September 27th – Body & Soul: Combatting the Dual Epidemic of HIV-Infection and Substance Abuse

More information about the ADAP Advocacy Association's sponsored events is available online at http://adapadvocacyassociation.org/events.html.

These activities are designed to raise awareness, offer patient educational programs, and foster greater community collaboration. Each one is enhanced by partnering with various other organizations, such as the AIDS Healthcare Foundation (AHF), Community Access National Network (CANN), North Carolina AIDS Action Network (NCAAN), and the Professional Association of Social Workers in HIV/AIDS (PASWHA). Several other projects are also in the works for the coming year.

If one good thing has come from the Trump Administration's proposed policies, then it is an increasingly energized front by the HIV community.

Foul Called; Weak Patient Protections Offered by HHS

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

The U.S. Department of Health & Human Services ("HHS") dropped the ball when it recently defined discrimination in plan benefit design under the Affordable Care Act ("ACA"); that statement is plainly put because it is true! Absent clearer guidelines, HHS basically issued a green light for insurance carriers to potentially discriminate against people living with chronic illnesses, including HIV/AIDS. Stakeholder groups have cried foul over the regulations, characterizing them as weak.

The ACA's Section 1557 is the nondiscrimination provision of the law. It law prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs or activities. Section 1557 builds on long-standing and familiar Federal civil rights laws: Title VI of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, Section 504 of the Rehabilitation Act of 1973 and the Age Discrimination Act of 1975.[1]

Photo Source: Class Action News

The "I Am Essential" coalition sent a letter to HHS signed by 197 organizations on the proposed rule. The letter outlined numerous concerns. Among them:[2]

• placing all or nearly all medications to treat a certain condition on the highest cost-sharing tier;
• not covering certain medications or not following treatment guidelines;
• imposing excessive medication management tools such as unreasonable prior authorization, step therapy requirements, and switching medications midyear;
• charging high cost-sharing to beneficiaries with chronic or serious conditions;
• and having narrow and exclusionary provider networks.

To read the letter, CLICK HERE.

There is plenty of evidence to suggest that marketplace plans are already engaged in discriminatory practices, which in many cases have adversely impacted patients living with HIV/AIDS. High deductibles, high co-insurance, and high co-payments are a few tactics being used by insurance carriers to shift the cost of care to patients living with chronic illnesses. To read last week's blog on this trend, CLICK HERE.

HHS, however, did leave the door open to review alleged discrimination on a case-by-case basis. Albeit welcome news, there has to be a better approach to potential barriers that may arise.

Carl Schmid, Deputy Executive Director, The AIDS Institute, characterized some of the concerns, "We are disappointed that HHS did not do a better job at specifically defining discrimination in plan benefit design. Despite the many benefits of the ACA and its prohibition on denying coverage to beneficiaries with a pre-existing condition, some insurance plans are finding ways to discriminate against patients, particularly those with chronic and serious health conditions.  Those practices should be defined and clearly prohibited. However, we are pleased that HHS reiterated they will review plans for discriminatory practices on a case-by-case basis through their enforcement activities, and identified a number of examples of possible discriminatory plan design.  We urge the Administration to rigorously use their oversight and enforcement tools."[3]

Even the pharmaceutical industry's trade association expressed caution over the regulations issued by HHS, acknowledging that they neglect to define discrimination. The Catalyst, which is the Pharmaceutical Research and Manufacturers of America's (PhRMA) blog, said:

"Protecting patients from discriminatory benefits is particularly important when it comes to plan formularies. For many patients with chronic conditions, it is relatively easy to predict their prescription drug needs. This means plans may be able to discourage enrollment by certain higher cost individuals simply by not covering the medicines they need or placing them on a high formulary tier. Unfortunately, we have seen many marketplace plans placing all medicines for certain conditions on the specialty tier or on a tier with coinsurance above 40 percent. In some cases, this is even happening in classes where generics are available. This leaves patients with no lower cost alternative and goes against the very nature of insurance by punishing individuals who happen to need a particular class of medicine."[4]

It is crucial that the public health community continue to monitor these glitches with the Affordable Care Act and collaborate on solutions to better assist patients living with chronic illnesses. Left unchecked, insurance carriers have demonstrated a history of pushing the envelope when it comes to discriminating against HIV/AIDS.
__________

[1] U.S. Department of Health & Human Services, Office of Civil Rights, "Section 1557 of the Patient Protection and Affordable Care Act," 2016.
[2] I Am Essential, "Patient Groups React to Final ACA Nondiscrimination Rule," May 13, 2016.                                 
[3] I Am Essential, "Patient Groups React to Final ACA Nondiscrimination Rule," May 13, 2016. 
[4] Pharmaceutical Research and Manufacturers of America, The Catalyst, "New non-discrimination rule neglects to define discriminatory benefits," May 19, 2016.