Feds Tell States to Cover Hep C Medications, Regardless of Substance Use

By: Ranier Simons, ADAP Blog Guest Contributor

The right to health is a human right recognized in many international human rights documents, such as the 1966 International Covenant on Economic, Social, and Cultural Rights and the World Health Organization’s (WHO) Constitution.[1,2] According to the WHO, “Countries have a legal obligation to develop and implement legislation and policies that guarantee universal access to quality health services and address the root causes of health disparities, including poverty, stigma and discrimination.”[1] To that end, in recent history, the United States Departments of Justice (DOJ) and Health and Human Services (HHS) have found it necessary to intervene in order to protect citizens’ right to health. 

Photo Source: U.S. Department of Justice

The DOJ Civil Rights Division issued a letter to state Medicaid administrators on January 24, 2024, reminding them of their obligation to ensure that their programs allow people who have both Substance Use Disorder (SUD) and Hepatitis C (HCV) to access direct-acting antivirals (DAAs).[3] In the letter, the DOJ and HHS reiterate Medicaid agencies are required to grant this access under the Americans with Disabilities Act (ADA). Under the Act, states cannot discriminate against people with disabilities, which includes SUD. SUD qualifies as a disability because it “substantially limits one or more major life activities and interferes with the operation of key bodily functions.”[5]

In 2022, the DOJ reached a settlement agreement with Alabama Medicaid after an investigation of its Medicaid policy. It was denying access to DAAs for people who had consumed drugs or alcohol six months prior to starting treatment and denying payment if they used any drugs during their treatment. The DOJ accused Alabama Medicaid of “imposing non-medically indicated sobriety restrictions for HCV treatment, in violation of the Americans with Disabilities Act (ADA).”[4] There was no scientifically evidence-based reasoning for the restriction. 

Alabama Medicaid agreed to multiple stipulations and reporting requirements as part of the settlement. They were required to reverse their sobriety policy for HCV treatment and agree not to create any further restrictions, such as requirements for drug or alcohol counseling.[4] Additionally, Alabama Medicaid had to notify Medicaid providers of the change and inform the  Alabama Board of Medical Examiners and the Alabama Department of Public Health.[4] One notable requirement was notification of all Medicaid recipients of the change, thus informing them of their rights. Interestingly, in the settlement, Alabama Medicaid denied any acknowledgment of any violation of the ADA but framed their cooperation as an amicable negotiated resolution to the matter.[4]

Photo Source: Arkansas Medical Society

The DOJ utilized the ADA in 2020 to reach a settlement with Massachusetts General Hospital.[6] Massachusetts General Hospital denied a cystic fibrosis patient access to be listed on the lung transplant list because he was taking suboxone, a drug used to treat dependence on opioids. The cystic fibrosis damaged his lungs so severely that he needed a lung transplant to live. As part of the settlement, Massachusetts General Hospital paid $170,000 to the patient and $80,000 to his mother.[6] The hospital additionally agreed to give ADA training to its staff and end its discriminatory policy. The patient ended up receiving a lung transplant at the University of Pennsylvania.[6] Selma Medical, Charwell Operating Nursing Facility, Athena Health Care Systems, Alliance Health, New England Orthopedic Surgeons, and King’s Daughters Medical Center are other providers that reached settlements with the DOJ after violating the ADA by denying healthcare to patients taking medication for SUD.[6] 

Utilizing the ADA to ensure health protections for people with SUD is a robust tool. However, under the ADA, protections against discrimination only extend to “a person in recovery who is no longer engaging in the current illegal use of drugs.”[7] Protections from being denied healthcare services is an exception or ‘carve-out’: “A person who is currently engaging in the illegal use of drugs can’t be denied healthcare or rehabilitation services because of their current use if they would otherwise qualify for these services.”[7] 

That is why the letter issued by the DOJ and HHS is important. Amplifying attention to the matter is a way to prevent harm before it happens since widespread understanding of the exception is lacking policy-wise and programmatically. Although people with SUD have rights, having to fight for their rights when denied care results in treatment delays and poor health outcomes. It is better to address and change policy before issues occur. The letter is guidance and an indication to entities that the DOJ can and will actively seek remedy against infractions. Optimistically, the threat of litigation is enough of a deterrent for entities to examine and modify their policies.

[1] World Health Organization. (2023, December 1). Human rights. Retrieved from https://www.who.int/news-room/fact-sheets/detail/human-rights-and-health#:~:text=The%20right%20to%20health%20and,of%20physical%20and%20mental%20health.

[2] Office of the United Nations High Commissioner for Human Rights. n.b. The Right to Health. Retrieved from https://www.ohchr.org/sites/default/files/Documents/Publications/Factsheet31.pdf

[3] Department of Justice. (2024, January). Letter to State Medicaid Administrators. Retrieved from https://www.justice.gov/d9/2024-01/dear_colleague_letter-state_medicaid_coverage_for_people_with_hcv_and_sud.pdf

[4] Settlement Agreement between the United States of America and the State of Alabama's Medicaid Agency. (2022, December 5). Retrieved from https://www.justice.gov/opa/press-release/file/1555501/download

[5] U.S. Department of Justice Civil Rights Divison. (2022, April 5). The ADA and Opioid Use Disorder: Combating Discrimination Against People in Treatment or Recovery. Retrieved from https://www.ada.gov/resources/opioid-use-disorder/#2-does-an-individual-in-treatment-or-recovery-from-opioid-use-disorder-have-a-disability-under-the-ada

[6] Rahim, H. (2023, Decemeber 26). Does the ADA protect people with substance use disorder from health care discrimination? Retrieved from https://blog.petrieflom.law.harvard.edu/2023/12/26/the-ada-as-protection-from-health-care-discrimination-towards-persons-with-substance-use-disorder/

[7] ADA National Network. (2020). The Americans With Disabilities Act, Addiction, and Recovery for State and Local Governments. Retrieved from https://adata.org/factsheet/ada-addiction-and-recovery-and-government

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. 

Americans with Disabilities Act Negates Tennessee HIV Criminalization Statute

By: Ranier Simons, ADAP Blog Guest Contributor

Christmas has come early in Tennessee. December 2023 began with a victory in the fight against HIV criminalization in the Volunteer State. As a result of complaints filed by the Center for HIV Law and Policy (CHLP), the U.S. Department of Justice found that Tennessee’s enforcement of its aggravated prostitution statute violates the Americans with Disabilities Act (ADA) by specifically targeting people living with HIV (PLWHA). CHLP hailed the decision, "CHLP Made the Call and the DOJ Answered."

According to the Centers for Disease Control & Prevention (CDC), 35 states currently have laws that criminalize HIV exposure, which fall into several categories. They are either HIV-specific laws regarding actions that can potentially result in HIV exposure, sexually transmitted disease (STD) or communicable disease exposure laws that could include HIV, general criminal statutes that could be used to define actions that could possibly cause HIV or STD exposure, or laws that enhance sentences for certain crimes when committed by PLWHA.[1] Tennessee’s aggravated prostitution statute falls into the sentence enhancement category.

Tennessee enacted its aggravated prostitution statute in 1991. Prostitution in the state, in general, is only a misdemeanor crime. However, the aggravated prostitution statute converts it to a Class C Felony if the person convicted is HIV positive. Conviction of a Class C felony means the possibility of imprisonment from three to fifteen years and up to a $10,000 fine.[2] Conviction of prostitution by someone without HIV is only a Class B misdemeanor, which could result in up to only six months in jail and up to a $500 fine.[2] Additionally, aggravated prostitution convictions require registering with the Tennessee Bureau of Investigations as a sex offender. 

To add insult to injury, in 2010, aggravated prostitution was reclassified as a violent sexual offense. This means that those convicted must stay on the sexual offender registry (SOR) for life. Previously, they were able to petition to be removed after ten years.[2] Moreover, an aggravated prostitution conviction makes one ineligible for judicial diversion. Judicial diversion is when first-time offenders are allowed to enter what equates to a conditional guilty plea. If they plead guilty and fulfill the conditions of a court-defined special probation period, their charges are dismissed, and their records are expunged.[2]

The Americans with Disabilities Act defines HIV/AIDS as a disability because it can significantly hinder life activities. PLWHA are protected whether they are symptomatic or not, and those protection were reaffirmed in Bragdon v. Abbott, 524 U.S. 624 (1998). Protection under the ADA means guaranteed “equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government services, and telecommunications…also protects persons who are discriminated against because they have a record of or are regarded as having HIV, or they have a known association or relationship with an individual who has HIV”.[3] All of those guarantees are denied to those convicted under the aggravated prostitution statute, which subjects those convicted to undue hardship in many aspects of their lives.

Photo Source: POZ Magazine

Being on the sexual offender registry significantly affects where people can live, work, or be present in public. You may not work or live within 1,000 feet of any school, childcare facility, public park, or playground.[2] Simply being on the premises of these areas is also prohibited unless you have an express reason for being there, such as being the parent of a child at a specific place. An individual on the SOR cannot take their child to a public park to play. However, they can retrieve their child from school only if they give written notice to the school in advance that they are a registered sex offender.[2] The SOR denies people the ability to spend time with children in their families. One example is a grandparent who is on the SOR and cannot spend time alone or babysit their grandchild because they are prohibited from being alone with minors.

A lifetime registry on the SOR facilitates long-term discrimination and even homelessness. Landlords run background checks and frequently won't rent to anyone on the SOR. Once on the SOR, a person’s personal information becomes publicly available. The publicly searchable Tennessee Bureau of Investigations (TBI) SOR website lists all sorts of data such as photos, ages, names, addresses, parole information, school and work addresses, unrelated criminal history, and more. Furthermore, the website enables visitors to click on the statutes for which one has been convicted. Thus, seeing that someone is convicted under the aggravated prostitution statute means public exposure of their HIV status. This leaves a person vulnerable to hate crimes, housing and employment discrimination, and mental stress from living with their life on display.

The DOJ investigation revealed that Shelby County in Tennessee had the highest enforcement rate of the aggravated prostitution statute. In 2022, Shelby County was the residence of 74% of people on the SOR for aggravated prostitution while housing only 13% of the state’s population.[2] Also, over 90% of those aggravated prostitution arrests were Black, with a large number being Black women, both cisgender and transgender.[2] The SOR further oppresses marginalized individuals financially. Many of those convicted are low-income, making the annual $150 mandatory fee for being listed on the SOR a hardship. Additionally, being on the SOR requires reporting in person four times a year to update registration.[2] Failure to do so results in a violation, which could result in jail time.

DOJ detailed multiple legal remedies to the ADA violations to both the state government and specifically the Shelby County District Attorney General’s Office (SCDAG). The list for the SCDAG includes stopping the enforcement of the statute, including probation violations related to violations of SOR reporting requirements, creating a protocol for vacating aggravated prostitution convictions, and educating all SCDAG attorneys about HIV and the nondiscrimination requirements of Title II of the ADA.[2] 

Photo Source: CDC

For the state, DOJ’s recommendations include ceasing the enforcement of the statute, using the TBI to remove people on the SOR who are there solely due to aggravated prostitution convictions, expunging all state records showing that those with aggravated prostitution convictions were ever on the SOR, and paying compensatory damages (SOR fees, court costs and fines, bonds, etc.) to those who were victims of the statute.[2,5] One very notable recommendation to the state is to notify all those who have been removed from the SOR and whose references to their convictions have been removed.[2] Not only is it legally empowering to have documentation in hand, but it is also mentally empowering to have confirmation of reclaiming control over one’s life.

The aggravated prostitution law is predatory to vulnerable populations and is not based on science, according to our government's highest law enforcement institution. It is draconian, according to advocates. Since 1991, advances in antiretroviral therapy have come a long way and it has opened the door to "treatment as prevention" (TasP) and "undetectable equals untransmittable" (U=U). Laws need to reflect these advances.

S. Mandisa Moore-O’Neal, CHLP Executive Director, states, “The implications of the DOJ’s findings are far-reaching. This not only puts the state of Tennessee on notice that this is a serious issue, but it also serves as notice to other states with similar HIV criminal statutes.”[4] Regarding the future continuation of the fight against HIV criminalization, she also says, “This is also an opportunity for other state coalitions organizing and educating around HIV criminalization to leverage these findings with lawmakers. When many state budgets are already tight, the possibility of new and often costly litigation may be the impetus to change these laws.”[4]

Jen Laws, President & CEO of the Community Access National Network applauded the decision, "This is an excellent development in implementing the ADA and affording protections to people living with HIV. We owe a debt of gratitude to our friends at CHLP for exploring this legal argument. DOJ's Civil Rights Division has room to expand on this work in other areas affecting people living with HIV and the legal system. From enforcement of medication access for incarcerated and jailed persons to enforcement of these same protections in family courts, our people face discrimination when interacting with our legal system and that needs to change."

In today’s political climate, many lawmakers either do not care about the adverse effects flawed laws have on marginalized communities or feel the consequences of the laws are somehow deserved due to their personal ideologies. Challenging the aggravated prostitution law by showing how it violates the ADA is a perfect example and blueprint of how to fight legalized oppression by using legal statutes that cannot be ignored. When one cannot change the system, it’s empowering to find ways to use the existing system to one’s advantage. Chalk-up a big win for CHLP...and PLWHA in Tennessee.

[1] Health Resources and Services Administration. (2023, September). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Dat1) Centers for Disease Control. (2023). HIV and STD Criminalization Laws. Retrieved from https://www.cdc.gov/hiv/policies/law/states/exposure.html#:~:text=As%20of%202022%2C%2035%20states,categorized%20them%20into%20four%20categories.

[2] U.S. Department of Justice Civil Rights Division. (2023, December 1). The United States’ Findings and Conclusions Based on its Investigation of the State of Tennessee and the Shelby County District Attorney General’s Office under Title II of the Americans with Disabilities Act, DJ No. 204-70-85. Retrieved from https://www.justice.gov/d9/2023-12/2023.11.30_tn_hiv_lof_final.pdf

[3] U.S. Department of Justice Civil Rights Division. (2023). Protecting the rights of persons living with HIV/AIDS. Retrieved from https://archive.ada.gov/hiv/ada_hiv_brochure.html

[4] Center for HIV Law and Policy. (2023, December 1). News Release: CHLP Made the call and the DOJ answered. Retrieved from https://www.hivlawandpolicy.org/news/news-release-chlp-made-call-and-doj-answered

[5] Kruesi, K. (2023, December 1). Tennessee’s penalties for HIV-positive people are discriminatory, Justice Department says. Retrieved from https://apnews.com/article/justice-department-hiv-tennessee-6cda4a9170dfbe46bd8d8f6af91f76cd

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.

Workplace Opportunities for People with Disabilities...Including PLWHA

By: Joyce Bender, President & CEO, Bender Consulting Services Inc.

Today, more than ever, it is important for people with disabilities to be knowledgeable about opportunities in the workplace. As we approach the 29th Anniversary of the signing of the Americans with Disabilities Act (ADA), we know that while some great changes have happened in our country, when it comes to the area of employment, the needle has moved very little. The unemployment rate for people with disabilities remains higher than that of any other group in America, with it being twice that of people without disabilities, with approximately 70% of people with disabilities falling outside the labor force.

Photo Source: multiplesclerosisnewstoday.com

With over 20 years of experience focused on disability employment opportunities, hosting an internet, talk-radio show on disability issues, Disability Matters, and traveling with the U.S. State Department to other countries to talk about disability employment issues, I have come to know one truth – stigma is what stands between people with disabilities and competitive employment. Stigma is an insidious thing that infiltrates even the most open-minded of people, when it is reinforced by years of being presented as ‘truth.’ It affects how family members and friends treat their loved ones, how societies interact with and communicate with their citizens, how educators and employers view their students’ and applicants’ potential, and often even how people with disabilities view themselves. Stigma creates a divide that touches everyone and mars the perception of people with disabilities.

This is true for people with visible and hidden disabilities. I am a woman living with epilepsy and a hearing loss. I have had people come up to me many times, to tell me how sorry they feel for me or assure me that they could never tell that I have ‘something wrong with me.’ It is stigma that causes these reactions of others when they learn I have a disability. In one of my trips with the State Department, a story was shared with me that I will never forget; in their country, not long ago, when a person with epilepsy had a seizure in public, the spot where they fell when experiencing convulsions would be outlined so that others in society would know that they should avoid stepping in that area, in case they might catch epilepsy. It is not true that a person can catch epilepsy from another, let alone do so by stepping where a person had a seizure; yet this myth was perpetuated in this culture by long standing actions of its people. While they no longer do this, the stigma surrounding epilepsy remains. People with epilepsy are not seen as equal to other members of society.

In the United States, we see similar legacies of stigma affect how we interact with our citizens with disabilities. Societal myths, long debunked through science about people with disabilities, still feed bias about how people with disabilities are viewed. Historically, people with disabilities have been viewed through a ‘medical model.’ This model of viewing people with disabilities is focused on diagnosis, symptoms, and cure of the disability and does not address ‘quality of life.’ It wasn’t until the 1900’s that a movement started to reevaluate that mode of thinking and began building a ‘social model’ that addresses how people with disabilities are viewed as a culture within our society. Even today though, many still cling to that medical model mentality, and miss the strengths, talents, and contributions of our citizens with disabilities.

For people with non-visible disabilities like me, including those who have mental health disabilities, people living with HIV, cancer survivors, people living with Crohn’s, individuals with neurodiverse backgrounds and people living with heart disease or diabetes, we are told to hide our disability and disassociate with the disability community. This advice, we are told, is to protect us, but it also silences us, removes our sense of community and isolates us. The behavior of society promotes feelings of shame and a lack of self-efficacy. I believe it is important to embrace those things that define us, to demonstrate through our actions and our character who we are and what it means to be a person with a disability. It is important to feel pride in our successes, persevere over those who wish to hold us back, and remain diligent in protecting our rights and the rights of others who share in our community.

There are things happening in America right now that I believe have the potential to change the trajectory for employment success for people with disabilities in our country. That change in mentality is one that I have been sharing with my customers and colleagues for years: hiring people with disabilities makes good business sense. Just like any other social group in our country, the disability community is filled with talents that have the potential to positively impact the bottom line of a company.

Due to leadership from Ted Kennedy, Jr., Disability:IN and AAPD, the Disability Equality Index (DEI) has already made strides toward educating employers on the benefits of accessing this talent pool. This survey allows a company to evaluate their disability inclusion practices and policies to determine success and areas of improvement. Studies on corporate participants of the DEI have shown that employers who have excellence in disability inclusion within their organization outperform and make more money than their counterparts who are not hiring people with disabilities. In response to this study, investors responsible for billions of dollars in the United States are asking companies what their plan is for inclusion of people with disabilities in the workforce.

The release of the DEI study by Accenture, on companies employing people with disabilities quickly followed announcements from OFCCP that for the first time disability inclusion and adherence to 503 would be a part of focused reviews that are even now being conducted in the United States. What do these 503 Focused Reviews mean? It means that companies who receive federal funding or hold contracts supporting or servicing federal agencies will be asked to account for their activities with regards to disability hiring affirmative action regulations. Failure to comply with Section 503 can mean loss of funding for federal contractors.

What does this mean for people with disabilities? It means that more and more companies are going to be looking to be inclusive of individuals with disabilities in the workforce as they understand the benefits of hiring people with disabilities as well as the potential revenue loss of not complying with OFCCP regulations. It means that disability hiring will be directly related to profit, with companies who are not hiring people with disabilities left behind.

For people with disabilities, now is the time to act in identifying disability friendly employers and opportunities for advancement for people with disabilities. Knowing how to identify employers with disability hiring programs and companies established success in hiring and inclusion of people with disabilities is the first step.

To get started, I recommend accessing the DEI’s list of Best Places to Work for Disability Inclusion. This list shows companies who received a score of 80 or higher on the DEI. Use this as a starting point to identify companies that are practicing excellence in disability inclusion. Take time to research these companies online to learn more about which companies fit with your personal beliefs and values and to learn more about what opportunities they have that may match with your personal career goals.

When researching the company and considering employment with the organization, ask questions that let you know more about the culture of the organization. Do they have a public diversity statement that includes disability? Do they have an employee resource network that includes resources that fit with your interests? Is there a disability group within that network? What philanthropic endeavors do they support? Are there opportunities to become involved in supporting those organizations or issues you are most passionate about? Is disability a part of this initiative? Does the company support supplier diversity, including certified disability-owned businesses?

It is important for people with disabilities to be aware of options available to them with regards to accommodations and workplace solutions some employers make available to their employees with disabilities, especially for employees with non-visible disabilities like HIV. When it comes to making accommodations, it falls to the employee to initiate these discussions in most organizations. Being knowledgeable about some of the industry best practices in this area can help an employee who has gained a disability or is looking to reenter the workforce to navigate these conversations successfully.

Some common accommodations that companies may consider that meet the needs of individuals living with HIV include:

Ergonomic Workspace
For individuals dealing with fatigue or whose disability has impacted their mobility or stamina may find an increase in productivity by ensuring their workspace allows for them to have extra supports. This could include a sit-stand desk, ergonomic mouse or keyboard, or a stand-lean stool.

Lighting & Magnification
Providing lighting that decreases eye strain is a common accommodation for people whose disability affects their vision. This could be providing access to more natural lighting, covers for fluorescent light tubes, blinds or shades that can be adjusted by the employee, glasses that block blue lights, or the ability to adjust screen lighting on computer or tablet screens.

Some amount of screen magnification is often built into computers. Working with technical support can optimize these functions for an employee. Additional tools and software can also be a resource for an employee who is experiencing vision loss.

Workspace Personalization
Many companies will allow some amount of workspace personalization to accommodate a variety of needs of their employees with disabilities. Some common items that employees have set up in their cubicles or office space have included small, personal refrigerators to store food items to meet specialized dietary needs and prevent cross-contamination with coworkers’ foods, space heaters, electric blankets or portable fans for individuals who are sensitive to temperature change, and air cleaners or purifiers for people who have respiratory considerations.

Job Sharing or Schedule Flexibility
Another practice that some employers are using is to allow employees to job share or work flexible schedules. In these instances, the employer will typically identify core hours of availability allowing for the opportunity to work the remainder on an adjustable schedule to meet the changing needs of their disability.

Remote Employment
As the world becomes more immersed in a digital environment that spans time zones and countries, many employees, both with and without disabilities, have been offered the opportunity to work some or all of their time remotely or from home.

The potential for people with disabilities to kick-start and accelerate their career is growing. I encourage anyone with a disability, visible or hidden, to take advantage of opportunities our current climate presents and to learn more about what accommodations may afford them the opportunity to remain in or reenter the workforce. By arming ourselves with information, we can have an open dialogue with employers who are increasingly looking for solutions to include the talents available in the disability community. For more information on possible accommodations that can meet your individual needs, I encourage you to visit the Job Accommodation Network (JAN).



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.