Recent guidance from the Centers for Medicare & Medicaid Services (CMS) allows states to require Medicaid recipients to work in order to receive their health coverage.  If Florida were to adopt such an approach, as a growing number of states have begun to do, thousands of residents would likely lose their access to health care.1

While the premise of work requirements, that they will support the development of workplace skills and economic independence, may sound appealing, in fact, it is fundamentally flawed.  First, it assumes that Medicaid recipients are not working, when in fact, 61% of adult Medicaid enrollees in Florida work.  Nationally, of those who aren’t working, more than 80% are in school or report an illness, disability, or caregiving responsibilities that keep them from working.

Additionally, work requirements subject people to burdensome paperwork and documentation requirements, which too often lead ultimately to loss of coverage.  In other words, work requirements cause recipients who are already working, or are duly exempt from work, to lose their Medicaid because of administrative errors, and/or the system’s inflexibility (e.g. late paperwork, administrative errors, insufficient work hours in a given month, or a brief spell between jobs).  The remaining individuals, who are neither working nor ill, disabled, or caregiving, likely don’t lack motivation to work, but supports that make work possible such as child care, and access to transportation.  Further, in a state like Florida, that has not expanded Medicaid; the pool of able-bodied adults who would be subject to work requirements is quite limited, further underscoring the illogic of work requirements here.

Having health care helps people work and look for work.  Ironically, taking it away will make it more difficult for many people to keep their jobs, or find a new job.  Anticipated coverage losses that would come with work requirements will make health outcomes worse, access to care more difficult, and will make any growth in employment rates among recipients highly unlikely.  In fact, a recent study of the first ever Medicaid work requirements, implemented in Arkansas found precisely these outcomes: thousands of people lost their Medicaid while there was no significant change in employment.  Work requirements, it turns out, don’t work.

If you or someone you know is on Medicaid and want to learn more about this potential change to the Florida program, please contact us.

_______________________
1 When work requirements have been challenged in federal court, they have been twice struck down, in Arkansas and Kentucky.

Background
Florida’s Medicaid program, public health insurance for certain low-income individuals, is jointly funded by the state and federal governments.  Regardless of the program’s annual costs, federal dollars cover over 60% of the bill.  Thanks to this reliable support, the State can meet the needs of all those who are eligible.  But this could change.

The federal government is currently encouraging states to elect to “block grant” their Medicaid program.  In contrast to the current guarantee of a “federal match,” a block grant would cap the federal contribution to Florida’s Medicaid program at a fixed amount.  Beyond that cap, the state would bear all responsibility for program costs.  The Administration’s move represents a major cut to federal Medicaid spending, with planned savings of $1.5 trillion from the national Medicaid budget over ten years.  To lure states into accepting a potentially massive loss in necessary funding, the Administration is promising increased flexibility in the Medicaid program.  But this is a misleading “inducement,” as states already have significant program flexibility.  What Florida needs is not more flexibility but a reliable funding partner in the face of growing demands for health coverage.

Status and Impact
Florida’s Medicaid program currently guarantees coverage for children in low-income families and very low-income parents of minor children, pregnant women, and individuals who are blind, aged, or disabled. Over 4 million Floridians rely on Medicaid for their health care.  If Florida opts-in to capped Medicaid funds, a budget shortfall will be inevitable.  While the federal government will save money, the state’s costs will balloon.  Medicaid in Florida already has one of the country’s lowest per enrollee spending rates.  When the state decides it is unwilling or unable to take on additional costs, it will be forced to take ruthless measures: cut eligibility, reduce benefits, and/or establish waiting lists.

Florida’s residents already have serious economic challenges and health care needs that underscore the potential negative impact of a Medicaid block grant.  For example, Florida is home to over 800,000 children living in families below the federal poverty level, has the second largest waiting list in the country for severely disabled residents requiring home and community based services in order to avoid institutionalization, and is tied for first among the states for the highest portion of senior residents.  The state has one of the nation’s highest rates of HIV infection and a high rate of drug overdose mortality, and will be among the first in the nation to experience the wide-scale health impacts of climate change.

Capping federal health coverage funds will mean that many of these people, and likely those with the most expensive care needs, will find themselves without coverage for the care they require.  A Medicaid shortfall would also threaten the state’s ability to cover high-cost prescription drugs, to address a public health emergency like the opioid epidemic or Zika, or to meet the needs of Floridians in an economic downturn.  In short, a Medicaid block grant would spell disaster for the health of state residents and the viability of the providers who serve them.

Next Steps

• It is important to educate stakeholders and Florida legislators about the long-term impact of block granting Medicaid in Florida. They need to ask and answer these questions:  
  How would a block grant impact the children/people with disabilities who rely on Medicaid?  How would it affect access to mental health and substance use services?  How would it impact community providers that depend on Medicaid payments?
• Florida decision-makers need to see not just data and budgets, but the faces and the stories of individuals and families who rely on Medicaid.  We are collecting stories of those who would be most impacted in order to educate about the risks of a Medicaid block grant.  If you or a loved one depend on Medicaid, and you worry about how a block grant might endanger the care and services you receive, please be in touch.
  

JACKSONVILLE, Fla., Aug. 7, 2019 – Several civil legal aid organizations today filed a federal class action lawsuit against the state agencies that operate Florida Medicaid after identifying a pattern of improperly terminating coverage of those whose eligibility originally stemmed from their qualification for federal disability benefits or their adoption through the state’s dependency system.

“This lawsuit seeks to rectify an issue we previously sought to address with the Florida Department of Children and Families to no avail,” said Katy DeBriere, legal director of Florida Health Justice Project. “In administering Florida’s Medicaid program on behalf of the Agency for Health Care Administration, DCF is systematically failing to provide federally guaranteed benefits to those whose eligibility criteria have changed but who nonetheless remain eligible for Medicaid. Furthermore, those affected by this failure have been put at risk of significant, irreparable injury by virtue of a lack of access to treatment for serious conditions including cystic fibrosis, cerebral palsy, epilepsy and schizophrenia.”

Federal law requires state Medicaid agencies to continue to provide coverage until a beneficiary has been determined to be ineligible under all eligibility categories. Additionally, the Florida Department of Children and Families (DCF) has to provide notice and an opportunity for a fair hearing to anyone whose Medicaid benefits are terminated.

In the cases of at least a dozen clients served by Jacksonville Area Legal Aid and Disability Rights Florida, all of whom were either adopted or have a disability, none of those things happened until the civil legal aid organizations intervened. The two organizations, together with the Florida Health Justice Project and the National Center for Law and Economic Justice, have filed the class action lawsuit in an effort to force AHCA and DCF to stop wrongfully denying Medicaid coverage to class members until their continued eligibility under all Medicaid categories has been determined and they have been provided proper notice in instances where DCF terminates Medicaid benefits.

“Medicaid services, especially home and community-based services, are a critical factor in keeping individuals with disabilities healthy and safe in their own homes,” said Amanda Heystek, director of systems reform for Disability Rights Florida. “Ensuring the continued eligibility for these services is vital to their well-being. The problems addressed by this lawsuit have been raised to the Department of Children and Families before, and people who depend on Medicaid services deserve a solution.”

One of two named plaintiffs, Clayton Harrell of Jacksonville, lost his Medicaid benefits July 31 upon turning 18 because he is no longer eligible through the state’s adoption assistance program, although he remains eligible for Medicaid based on his age and household income as well as disability. Harrell, who was adopted out of foster care, has been diagnosed with multiple physical as well as mental health conditions.

Similarly, Lakeland resident Austin Trueblood, 31, who is diagnosed with Down Syndrome, had his Florida Medicaid benefits cut when the Social Security Administration approved his application for Disabled Adult Child (DAC) benefits, thus making him ineligible for the Supplemental Security Income that had originally qualified him for Florida Medicaid. Had DCF conducted a federally mandated review prior to cutting his Medicaid benefits, the agency would have discovered that he remained eligible for Medicaid based on his DAC benefits.

“AJ has been entitled to these Medicaid services since he was 18 years old,” said Suzanne Trueblood, Austin’s mother and guardian. “Just because his Social Security status was changed, he was kicked off the program when he should not have been. His needs have not changed at all, and he still needs this health care. We asked if the change would affect his Medicaid eligibility, and they said it wouldn’t. Yet, he was kicked off anyway. There is no way he would have been able to navigate this on his own. I am sure that others may have been kicked off erroneously, too, and they may not have anyone to help them get it reinstated.”

When the civil legal aid lawyers began researching the root cause for the systemic failure, they discovered a 2018 State of Florida Auditor General report stating that DCF had not, as of November 29, 2017, conducted a timely review of more than 650,000 data exchanges and that “the risk that eligible individuals may not receive timely benefits … is increased when data exchange responses are deleted or not timely reviewed and processed.”

Among the unreviewed data exchanges are those that occur between DCF databases and those of the Social Security Administration, which administers federal disability benefits, and the Florida Safe Families Network, through which benefits under state adoption agreements are administered. The 2018 Florida Auditor General report indicates that DCF has been repeatedly warned of the problem but has not successfully addressed it. In response, DCF cited insufficient staff.

Read the complaint

About Jacksonville Area Legal Aid
The mission of Jacksonville Area Legal Aid, Inc. is to obtain and provide high-quality legal assistance to low-income and other special-need groups and to stimulate and empower groups of poor people to accomplish energetic and affirmative advocacy, all to alleviate the circumstances, incidence and causes of poverty.

About Disability Rights Florida
Disability Rights Florida was founded in 1977 as the statewide designated protection and advocacy system for individuals with disabilities in the State of Florida. We provide free legal and advocacy services to people with disabilities through the authority and responsibility of nine federal grants. Our mission is to advance the quality of life, dignity, equality, self-determination, and freedom of choice for people with disabilities.

About Florida Health Justice Project
A new nonprofit advocacy organization, the Florida Health Justice Project seeks to improve access to affordable health care for Floridians, with a focus on vulnerable low-income populations. FHJP expands the advocacy community’s capacity to resolve individual access issues and educate consumers; identify and address systemic barriers to healthcare; and protect Medicaid and other safety-net programs.

About National Center for Law and Economic Justice
The mission of the National Center for Law and Economic Justice is to advance the cause of economic justice for low-income families, individuals, and communities across the country.

On June 14, 2019, the U.S. Department of Health and Human Services officially published proposed changes to the nondiscrimination regulations under Section 1557 of the Affordable Care Act (ACA).1 The announcement triggered a 60-day public comment period. Section 1557, the nondiscrimination provision of the ACA, expands long-standing federal civil rights protections to certain healthcare programs and activities. The proposed rule changes will negatively impact multiple at-risk populations. Among other revisions, the changes would:

• Exempt most health insurance companies from nondiscrimination language
• Allow hospitals and providers to deny care based on religious beliefs
• Eliminate references to “sexual orientation” and “gender identity” as well as “sex stereotyping” virtually erasing LGBT protection
• Undo protections for HIV positive individuals that resulted from a complaint originating over HIV drug price inflation in Florida
• Remove the requirement for informing limited English proficiency (LEP) individuals of the availability of language assistance services

Potential Impact
Health care policy professionals, providers, and advocates are weighing in on how these changes negatively impact women’s reproductive healthcare access, as well as healthcare access for the LGBT, HIV+, and LEP populations. Raising the stakes for Florida, the state ranks 3rd for size of Medicaid population,6 10th for highest LGBT population percentage7 and 3rd highest for HIV infection rate in the United States.8 Additionally, Florida’s LEP population ranks 4th largest in the country with 2.1 million individuals.  

Florida Health Justice Project (FHJP) Next Steps
Alongside national, state and local partners, FHJP will be submitting official comments to the Department of Health of Human Services detailing the potential negative impact of the proposed changes on Floridians and discouraging implementation. In the coming days, FHJP will be gathering data and conducting research to inform our comments and conclusion. In addition, FHJP will share our research with other interested entities and encourage our partners to formally submit comments as well. Please contact Timothy Loftus, M.D., FHJP Law Clerk, at tloftus@law.miami.edu for questions.

Contact:
Miriam Harmatz, J.D., Co-Director
Florida Health Justice Project
harmatz@floridahealthjustice.org
Office: (786) 558-4950
Cell: (786) 853-9385 
 
 
(MIAMI) – Government-subsidized health-care benefits are critical for low-income Florida seniors – particularly those who are frail and disabled – but they can be hard to come by, which is why attorneys at the nonprofit Florida Health Justice Project (FHJP)and Legal Services of Greater Miami Inc. have published a guide for those advocates engaged in helping seniors access long-term care and related services under Florida Medicaid.
 
The Advocate's Guide to the Florida Long Term Care Medicaid Waiver, made available online thanks to the Florida Justice Technology Center (FJTC), concerns long-term services and supports that are essential to remaining at home or in the community rather than in a nursing home.
 
“For Florida seniors who want to stay out of a nursing home after they can no longer handle the routines of daily living, these services are critical, but like many Medicaid services, navigating the system is complicated,” said Miriam Harmatz, co-director of the Florida Health Justice Project, a new nonprofit advocacy organization. Earlier this year, the project prepared The Advocate’s Guide to the Florida Medicaid Program.

“These guides exemplify our mission and work,” Harmatz said. “Through collaboration with local legal services programs, FJTC and national partners, including Justice in Aging, we’re providing valuable resources for Florida’s legal aid and pro bono advocates who are helping clients get medically necessary services.” This is the second such collaboration between FHJP and FJTC.
 
As with The Advocate’s Guide to the Florida Medicaid Program, FJTC took the lead on dissemination by turning both guides into online, interactive versions.

“The advocate community plays such an important role in expanding access to justice, because they’re typically the ones advising and assisting those in need,” FJTC Project Manager Joseph Schieffer said. “We wanted to create something that would amplify their work and streamline the process to find information. Having the guide online makes it easier for advocates to navigate the content and share it with others.”
 
Long-term care – including both nursing home and community-based care – are both part of Florida Medicaid’s Long-Term Care Program. The new guide, however, focuses exclusively on the part of the program for those living at home or in the community, which falls under Florida Medicaid’s long-term care “waiver.” Under federal law, waivers allow states to provide home and community support services to a set number of people as an alternative to institutional care.
 
Also known as “home and community-based services,” the covered services are not typically available through Medicare or standard medical insurance, such as personal-care aides and private-duty nursing.
 
Nationwide, over half of people turning 65 will at some point develop a severe disability or medical condition that will require home and community-based services. Over 100,000 Floridians currently receive services through Florida Medicaid’s long-term care waiver, with over 50,000 on a waiting list.


The guide provides advocates with an overview of the authority governing Florida's Medicaid managed care long-term care waiver and a roadmap addressing basic questions including:

• who is eligible for the long-term care waiver
• how to apply
• what to do if an application is denied or delayed
• how the wait list works
• what to do if eligibility is terminated
• what services are covered and how the “care plan” is developed
• how managed care works
• what to do if services are denied, delayed, terminated or reduced

 
Jocelyn Armand, Legal Services of Greater Miami advocacy director, co-authored the guide with Harmatz, Katy DeBriere, co-director of the Florida Health Justice Project, and Michelle Adams, research assistant.

"The Advocate’s Guide is a much-needed resource for advocates and consumers alike. The guide’s road map helps navigate one of the most complex parts of the Medicaid program. We are extremely appreciative to the Florida Health Justice Project for the opportunity to collaborate on this crucial endeavor,” Armand said.

Anne Swerlick, health policy analyst with the Florida Policy Institute, endorsed the guide.
“This guide is an invaluable tool for Florida advocates seeking to ensure that consumer protection policies are implemented to protect Florida’s frailest residents,” Swerlick said.

Pro bono technical support for the guide also came from other groups, including Justice in Aging, a national organization that uses the power of law to fight senior poverty by securing access to affordable health care, economic security, and the courts for older adults with limited resources.

About the Florida Health Justice Project

A new nonprofit advocacy organization, the Florida Health Justice Project seeks to improve access to affordable health care for Floridians, with a focus on vulnerable low-income populations. FHJP expands the advocacy community’s capacity to resolve individual access issues and educate consumers; identify and address systemic barriers to healthcare; and protect Medicaid and other safety-net programs.

The 24-page guide summarizes the legal governance of a complex and frequently changing federal-state insurance program that covers medical expenses for eligible families, pregnant women, elderly and disabled individuals and others. An additional 10 pages contain 128 specific legal citations.
 
“The guide addresses basic questions asked by advocates, applicants and beneficiaries,” said Miriam Harmatz, co-director of the new Florida Health Justice Project, who co-authored the guide with Margaret Kosyk of Coast to Coast Legal Aid of South Florida Inc. and Jazmine-Janine Dykes, a third-year law student at the University of Miami School of Law.
 
Among the questions the guide answers are: who is eligible for Medicaid; how to apply; what to do if an application is denied or delayed; what to do if eligibility is terminated; what services are covered; how managed care works; and what to do if a beneficiary’s services are denied, delayed, terminated or reduced.
 
In addition to providing a basic roadmap for obtaining Medicaid eligibility and/or services, the guide, which will be regularly updated, provides Florida advocates with citations to the underlying law and relevant policies in the event their clients experience denials or delays.
 
“The Advocate’s Guide is a wonderful resource for health-law advocates in legal services programs, as well as for pro bono attorneys working in this complex area of the law,” said Barbara J. Prager, executive director of Coast to Coast Legal Aid of South Florida Inc.
 
The new Florida guide is one of the first of its kind in the nation and is based on a template created by the National Health Law Program (NHeLP) for use in creating state-specific guides. It was produced with financial support from the Florida Justice Technology Center (FJTC), a nonprofit corporation established to increase access to justice through the innovative use of technology.
 
“The guide exemplifies the mission of the Florida Health Justice Project, which is to increase the advocacy community’s capacity to ensure access to health care for low-income Floridians,” Harmatz said. “We are deeply grateful to both FJTC for their financial support and to NHeLP for sharing their expert support and materials, including a template guide. It would not have been possible without them.”
 
The Advocate’s Guide to the Florida Medicaid Program is available at https://www.floridahealthjustice.org/medicaid-guide.
 
About the Florida Health Justice Project
 
A new nonprofit advocacy organization, the Florida Health Justice Project seeks to improve access to affordable health care for Floridians, with a focus on vulnerable low-income populations. FHJP expands the advocacy community’s capacity to resolve individual access issues and educate consumers; identify and address systemic barriers to healthcare; and protect Medicaid and other safety-net programs.

A new Florida Policy Institute (FPI) report projects net state budget savings of a half billion dollars if Florida expands its Medicaid program. Under the Affordable Care Act, the state can tap into billions of new federal Medicaid dollars if it opts to cover more than 500,000 low-income uninsured Floridians.

Based on the experiences of other states and FPI’s analysis of FY 2016-17 data, the potential savings and increased revenues far exceed the additional costs that would accompany Medicaid expansion.

Savings and increased revenue would be generated through:

• Enhanced federal matching dollars to continue coverage for the medically needy, adults with disabilities, pregnant women and women with breast and cervical cancer. Currently, the federal government pays 61 percent of every state dollar spent on care for these groups. With Medicaid expansion, the federal match would increase to 90 percent.
  

• Replacing millions in state General Revenue funds with federal Medicaid dollars to support mental health and substance abuse treatment programs, hospital inpatient costs for prisoners and uncompensated care programs.

• Revenue gains from provider assessments.
  

Medicaid expansion provides Florida policymakers an unprecedented opportunity to free up state resources that can be used to meet the pressing needs of our families, communities and economy. These include education, workforce training, affordable housing, roads and building sustainability into our coastal communities.

Washington – Fifteen Kentuckians enrolled in Medicaid today filed a class action lawsuit against the Trump administration challenging its approval of sweeping changes to Medicaid law that will endanger the health care of tens of thousands of low-income individuals and families in the state. The plaintiffs are represented by the National Health Law Program (NHeLP), Kentucky Equal Justice Center (KEJC), and the Southern Poverty Law Center (SPLC). Jenner & Block is counsel to NHeLP in this case.

Filed in the U.S. District Court for the District of Columbia, the lawsuit charges that Kentucky’s recently approved Medicaid waivers violate the Secretary of HHS’s authority under the Social Security Act, because they are not an experimental project that is consistent with the objectives of the Medicaid Act. It is the first lawsuit brought to challenge a Trump administration Medicaid waiver approval.

“Through imposition of premiums and cost sharing, ‘lockouts,’ benefits cuts, and a work requirement, the waiver will radically reshape Medicaid in a manner that, by the State’s own admission, will result in substantial reductions in coverage,” the lawsuit states.

NHeLP Legal Director Jane Perkins said the Secretary far exceeded his authority in granting Kentucky’s waiver.

“These waiver approvals raise a host of legal issues -- not just the work requirements and premiums but eliminating health care services, such as transportation to health care facilities or providers. This amounts to a project demonstrating how to destroy a strong health care program,” Perkins said. “Allowing the State to ignore fundamental Medicaid protections will result in large numbers of low-income individuals and families losing health care coverage. We are calling on the federal court to step in and stop the Trump administration from re-writing the Medicaid Act and stripping Kentuckians of vital health care.”

KEJC Senior Attorney Anne Marie Regan said, “The Cabinet’s own estimate is that around 95,000 Kentuckians will lose Medicaid coverage. The purpose of Medicaid is to provide medical insurance to people who cannot afford it, not to create barriers to coverage. Demonstration waivers are supposed to make access to health care easier. This approval does the opposite. It is not only in violation of Medicaid law but is immoral.”

After HHS announced approval of Kentucky’s waiver, the state’s Republican Governor Matt Bevin promptly signed an executive order in an attempt to intimidate those at risk from seeking relief in the courts. Bevin’s executive order calls for the end of the state’s Medicaid expansion if his approved waiver is found to be illegal.

SPLC Deputy Legal Director Samuel Brooke said, “The governor’s threat – to punish the 400,000 residents who have received Medicaid under the expansion if a court rules against the Kentucky HEALTH project – is shameless. We will not be intimidated. We will defend the rights of individuals to enroll in Kentucky’s Medicaid program.”

The lawsuit’s plaintiffs represent Kentuckians from all walks of life who rely on Medicaid for their health care. They reside in all parts of the state and are active in various ways in their communities. They include a minister, who is also a mortician, a mechanic, a musician, a retired health care worker, a church administrator, a bank teller, students, caregivers, house cleaners, and housekeepers for a health care center and a university. The plaintiffs have a variety of health care concerns, from high blood pressure, diabetes, and mental health problems to poor vision and dental problems.

Under the approved waiver, they are all in danger of losing Medicaid coverage.

For all of the plaintiffs’ stories, see the complaint here.

To speak with Perkins, Regan, or Brooke please contact: Jeremy Leaming, NHeLP, 301-233-0867 or  leaming@nhealp.org; Anne Marie Regan, KEJC, 502-468-9403, amregan@kyequaljustice.org; or Ashley Levett, SPLC, 334-296-0084, ashley.levett@splcenter.org.

For two years Vickie Goldstein filed appeals and wrote letters trying to get Florida’s Medicaid program to pay for a drug with the potential to cure her of the viral infection that was slowly destroying her liver.

For two years she got the same answer: You have to get sicker first.

“I talked to a couple of attorneys who specialized in insurance law, and they all said to me, ‘We can’t make any money suing the government,’ so they didn’t want any part of it,” said Goldstein, who at 57 had been living with hepatitis C for more than a decade.

Finally, in December 2015, her Internet search hit upon Florida Legal Services Inc. staff attorney Miriam Harmatz, a health law expert whose work is supported by The Florida Bar Foundation.

“I stumbled onto Miriam. She was the only one I saw who represented poor people and not hospitals and doctors,” said Goldstein, a resident of Delray Beach.

As it turned out, Harmatz would not be alone in representing Goldstein. She quickly brought in Vicki Tucci Krusel, managing attorney of the Coverage to Care Legal Initiative of the Legal Aid Society of Palm Beach County, as well as Abbi Coursolle of the National Health Law Program (NHeLP).

“They were the most amazing group of women that I have ever met,” Goldstein said. “I mean they just went right into action mode.”

At the time, Goldstein had already lost her appeals through her Medicaid managed care company and was about a month away from a fair hearing with the Florida Division of Administrative Hearings. She handed over to her legal team reams of documentation, along with research she’d done to support her case.

“She’s such a strong and brave woman, but at the same time she was very physically broken, emotionally broken from this fight in trying to really save her own life,” Krusel said.

Goldstein’s coverage denials were based on a policy of the Florida Agency for Health Care Administration (AHCA) and its contracted Medicaid managed care companies. The policy required that a patient’s liver fibrosis, or scarring, be at least a three on a four-point scale, with stage four liver disease being so severe that patients often need a liver transplant. Goldstein was not yet stage three, but her health was compromised. She had no appetite, weighed about 100 pounds, and her brain was foggy all the time.

Dr. Michael Fried, director of hepatology at the University of North Carolina at Chapel Hill, said delaying
therapy until a patient has progressed to advanced fibrosis places that person at risk for liver cancer and other complications of cirrhosis.

“The best management is to treat patients in early stages of disease, prior to the development of scarring,” Fried said.

Goldstein’s attorneys knew they needed to get results quickly for Goldstein, but Goldstein wanted to do more.

“We wanted Vickie to get her medicine as soon as possible, because she was quite ill, but she was also very clear that she wanted to help other people,” Harmatz said. “One of the joys of our work is when we’re working with a client who sees the opportunity to not just help themselves but to help other similarly situated people, and she really wanted to do something systemically.”

A systemic approach was important since hepatitis C is the nation’s leading blood-borne infection, affecting about 3.5 million Americans and killing nearly 20,000 every year.

For that reason, Coursolle had been following Medicaid coverage of drugs offering a cure ever since they came on the market in 2013. The drugs, called direct-acting antivirals, are close to 95 percent effective. They are also expensive. Viekira Pak, the drug Goldstein had been prescribed by her doctor, cost up to $31,000 a month at the time, and the course of treatment was three months.

Early on NHeLP had advocated with the Centers for Medicare & Medicaid Services (CMS), the federal agency that oversees the Medicaid program, asking them to inform states that they had to make direct-acting antivirals more widely available, in accordance with medical guidelines. In 2015, CMS did just that.

“At that point, once we saw certain states that were either very slow to implement the guidance from CMS or completely refusing, we felt like a litigation strategy could be appropriate to enforce the law in states that were still not making treatment available,” Coursolle said.

Rather than immediately filing suit in federal court, however, Goldstein’s legal team opted initially to conduct discovery at the administrative hearing level. Based on what they learned, they sent AHCA a demand letter, putting the agency on notice that it was in violation of the federal Medicaid Act. The letter demanded that AHCA change its policy and gave a realistic deadline.

The legal aid attorneys were pleasantly surprised with the response.

As of June 1, AHCA no longer requires evidence of advanced liver fibrosis for patients to receive curative hepatitis C treatment.

“Once they took the time to engage with us it was clear that the staff at the state really understood the issue and were willing to work with us to try to do the right thing,” Coursolle said.

Having completed her treatment in September, Goldstein is starting to feel better, and the virus is no longer detectable in her blood. She now knows she’ll be able to go on caring for her aging parents. And she’s looking forward to having more energy for pickleball, a sport somewhat like badminton or tennis that’s her main social outlet.

She also wants to continue doing what she can to help those denied their medications for other conditions.

“It was so wrong. The whole thing was so wrong,” she said. “If I had breast cancer would they wait until I had stage four cancer until I got treated? I don’t think so.”

Fried, whose research has contributed to the development of direct-acting antivirals, had advised Goldstein’s legal team on the health consequences of delaying treatment.

“The policy about waiting until people get advanced fibrosis was groundless, and it was solely based on
financial considerations. There was no medical reason why you would wait for people to get worse,” he said. “The other complications are way more costly than a one-time course of treatment. But payers are looking at the annual budget. They’re not necessarily looking at what happens 10 years from now.”

What sets direct-acting antivirals apart from other treatments, he said, is that they can cure a patient in a relatively short period of time, as opposed to medications patients have to take for life.

“Because the medicines are so effective, they are really very cost-effective,” he said.

In fact, it’s conceivable that in the not-too-distant future the cost to society of treating hepatitis C could be drastically reduced. That’s because with the arrival of direct-acting antivirals, the Centers for Disease Control and Prevention, the Institute of Medicine and other groups are working on a national strategy for eradicating hepatitis B and C. The cost of treatment, meanwhile, has fallen by as much as 50 percent thanks to negotiated rebates and competition.

In spite of the long-term benefits, a 2016 study reported in the journal Viral Hepatitis found that at least 30 percent of Medicaid beneficiaries with hepatitis C who request a new breakthrough drug are denied access to treatment.

But thanks in large part to legal advocacy, that’s changing.

Fried said Medicaid programs and other payers around the country, including Blue Cross Blue Shield of North Carolina and the state’s Medicaid program, are following the lead of states like Florida and eliminating barriers to treatment.

“We’re starting to see some loosening of many restrictions,” he said. “You can attribute that to the success of these kinds of cases.”