In the past year, new hepatitis C drugs that promise higher cure rates and fewer side effects have given hope to millions who are living with the disease. But many patients whose livers aren’t yet significantly damaged by the viral infection face a vexing reality: They’re not sick enough to qualify for the drugs that could prevent them from getting sicker.

An estimated 3 million people have hepatitis C. Faced with a cost per patient of roughly $95,000 or more for a 12-week course of treatment, many public and private insurers are restricting access to those who already have serious liver damage. Other strategies that limit access include restricting who can prescribe the drugs or requiring early proof the drug is working before continuing with treatment. In addition, many state Medicaid programs require that patients be drug and alcohol free for a period of months before they can get the hepatitis C drugs.

“Everybody is trying to figure out how best to deliver needed treatments without blowing out resources because of the cost,” says Brendan Buck, a spokesman for America’s Health Insurance Plans, a trade group. AHIP has been an outspoken critic of high prices for specialty drugs.

Insurers base their coverage decisions in part on practice guidelines issued by clinical groups such as the American Association for the Study of Liver Disease (AASLD). That organization recommends giving patients with advanced liver disease priority in treatment. “Limitations of workforce and societal resources may limit the feasibility of treating all patients within a short period of time,” the organization said in a press release announcing the recommendations.

Paul Walker is one of the healthy ones. For the first time in many years, the self-employed computer systems consultant has health insurance, a silver-level HMO from Blue Cross Blue Shield of Texas for which he pays $211 a month to cover himself and his wife. (Walker had earlier investigated getting insurance through Texas’ high-risk pool but balked at the $1,200 monthly premium for two people.)

Diagnosed with hepatitis C in 1998, the 53-year-old Tyler, Texas, resident was thrilled to learn that his liver is still basically healthy. A biopsy showed only slight evidence of the fibrous scar tissue that can cripple the liver, eventually resulting in cirrhosis or liver cancer.

Many baby boomers who have hepatitis C contracted it years ago from blood transfusions at a time when blood was not screened for the virus.

Walker’s doctor prescribed Sovaldi, a pill approved by the Food and Drug Administration in December that can cure the chronic infection in 12 weeks, significantly faster than the nearly year-long course of treatment often required under older drug regimens. Sovaldi must be taken with another hepatitis C drug such as interferon, which can cause flu-like symptoms, nausea and depression and which adds to the cost. Instead of interferon, Walker’s physician prescribed Olysio, another recently approved hepatitis C drug that is popular among physicians. But its use in combination with Sovaldi for cases like Walker’s hasn’t been approved by the Food and Drug Administration.

Walker’s insurer denied his physician’s request for the drug. Walker appealed the denial and was turned down again. The insurer cited the off-label use of Olysio in its denial, but Walker says he doesn’t think an approved combination of drugs would have changed the decision. The insurer generally doesn’t approve Sovaldi for patients like Walker, whose liver fibrosis is stage “F1” on scale of F0 to F4, he said. Only patients with more severe liver damage, stage F3 or F4, are typically approved for Sovaldi.

“We are committed to providing our members access to quality, cost-effective medications,” Dan McCoy, chief medical officer for Blue Cross Blue Shield of Texas, said in a statement. “Our coverage criteria is based on clinical trial data, published literature and recommendations from a wide variety of medical specialty societies. We constantly review and update our coverage criteria as new information becomes available or new specialty drugs or treatments come to market.” The insurer didn’t respond to a request for specific coverage criteria.

In October, the FDA approved another hepatitis C drug, Harvoni, a daily pill that doesn’t have to be taken with another drug. A typical 12-week course of treatment will generally cost about the same as for Sovaldi used with another drug (unless it’s Olysio, which can push the total treatment cost to $150,000 or more). Patients like Walker might be cured in as little as eight weeks using Harvoni, however, slashing the cost by a third.

Walker says he hopes he’ll be approved for Harvoni.

“The fact that I’m only F1, that’s good,” says Walker. “But until I actually get the medication and am cured there’s going to be a lot of anxiety.”

Many baby boomers who have hepatitis C contracted it years ago from blood transfusions at a time when blood was not screened for the virus. Walker believes he got it following a childhood accident that sent him to the hospital. Others got it from contaminated needles while experimenting with injection drugs. Now, hepatitis C infections are on the rise again as a new generation of prescription opioid abusers moves from pills to injection drugs.

According to the Centers for Disease Control and Prevention, up to 70 percent of people infected with the hepatitis C virus will develop chronic liver disease and up to 20 percent will eventually develop cirrhosis, a severe scarring of the liver. Up to 5 percent will develop liver cancer.

Patient advocates say that in addition to helping individual patients avoid health problems down the road or infecting others, the new drugs present an enormous public health opportunity.

“We can address hepatitis C and eradicate it,” says Ryan Clary, executive director of the National Viral Hepatitis Roundtable, an advocacy group.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

RENO, Nev. – For Carolyn Oatman, enrolling in Medicaid this year was “a dream come true.”

Uninsured since she lost her job five years ago in this desert gambling city, Oatman, 57, often couldn’t afford the drugs to control her asthma and high blood pressure. She would sell her blood plasma to scrape together enough money to see a doctor.

Since she signed up for Medicaid, though, her care is free, including her medicines. But there’s a downside: It can take two months to get a doctor’s appointment at a local community health center, or an all-day wait if she just shows up.

Such delays are a result of the surge in newly insured patients seeking care as Nevada became one of 26 states to expand Medicaid under the Affordable Care Act in 2014. The Reno area has seen its Medicaid enrollment nearly double this year — one of the biggest jumps of any metro area nationwide.

In many ways, the experience of this self-proclaimed “Biggest Little City in the World,” where glitzy hotels abut gritty neighborhoods of pawn shops and strip clubs, illustrates the promise and pitfalls of expanding Medicaid, the federal-state insurance program for the poor.

Though happy to have coverage, many new enrollees are frustrated by the lack of providers willing to see them, which can mean long waits for care, according to interviews with patients, doctors and local health officials.

Sometimes, when Oatman needs to see a doctor in a hurry, she drives to the nearest emergency room – getting care where it costs taxpayers the most.

“I love it on Medicaid because now I can go the emergency room when I need to and don’t have to worry about the bill,” said Oatman, whose only income is her husband’s $1,200 monthly disability check.

Physicians and clinics that treat the poor say they’ve been overwhelmed by new patients, many of whom suffer from multiple chronic conditions.

“We are struggling to keep up with demand for care,” said Chuck Duarte, executive director of Community Health Alliance, the region’s largest federally funded community health center.

Duarte, the state’s former Medicaid director, said he’s worried the problems will escalate when the second Obamacare enrollment period begins Nov. 15.

Nevada Signed On Early

Nevada Gov. Brian Sandoval was the first Republican governor to embrace Medicaid expansion after the Supreme Court in 2012 made that provision of Obamacare optional for states. In December 2012, Sandoval estimated about 78,000 Nevadans would gain Medicaid coverage starting in 2014.

In fact, Medicaid enrollment statewide grew from 330,000 people in September 2013 to more than 601,000 in August 2014— an 82 percent increase, according to the Nevada Department of Health and Human Services. That compares to average enrollment growth of about 20 percent in the states that expanded the program.

Among the reasons for the rapid take-up in Nevada were its high uninsured rate and previously stingy Medicaid eligibility guidelines, which excluded childless adults altogether and covered jobless parents with dependent children only if they made below 24 percent of the federal poverty level, or about $5,700 for a family of four.

In Washoe County, the state’s second largest county where Reno sits at the base of the Sierra Nevada mountains, enrollment increased from 50,000 to over 90,000 members this year.

Many of those new enrollees have far greater health needs than the mothers and children who dominated the Medicaid rolls in the past, said Eric Lloyd, chief executive of Amerigroup of Nevada.

Amerigroup has seen more cases of advanced heart disease, lung disease, diabetic complications and advanced cancers. Mental illness and substance abuse problems are also way up. The rate of members getting hospital care doubled this year, he said.

Duarte said the influx of Medicaid patients seeking services has exacerbated the longstanding shortage of doctors and other health providers. “It’s a combination of lack of providers and doctors unwilling to take these patients,” he said.

Without enough exam space and providers to keep up with demand, the health center, which saw 26,000 patients last year, turns away hundreds of patients a week seeking immediate care, he said. While existing patients may wait a month or more for appointments, new patients may not be able to get appointments for two months.

“We’ve been told by our Medicaid managed care organizations that we have several thousands of their members waiting for their first appointment,” Duarte said.

‘My Life Is Back On Track’

Still, there are individual success stories.

Karen Silverman, 61, is one of those. In the past, working as a parking lot attendant without health coverage, she often could not afford the drugs to treat her high blood pressure and diabetes.

“I would forgo my cholesterol or blood pressure medicine so I could afford my insulin,” she said. “It was scary but I had no choice.”

In February, she enrolled in Medicaid. Now she pays nothing for doctor visits or prescription drugs. After several months of taking her medications regularly, her diabetes and blood pressure are better controlled and she has started walking again.

“I feel as if my life is back on track,” she said.

And she is not the only one.  In the past year, Duarte says that more of the health center’s patients are controlling chronic health problems as more became insured.  For example, about 73 percent of hypertension patients have their blood pressure under control now, compared to 64 percent a year ago.

Amerigroup and UnitedHealthcare, the managed care plans the state pays to take care of most Medicaid enrollees, point to many such stories, even as they acknowledge the challenges of meeting increased demand for care.

The plans say they are working to add providers, but are limited by the shortage of specialists and by how much they can pay based on their state funding.

“We are doing the best we can with the available provider network,” said Amerigroup’s Lloyd. In addition to more doctors, he said the health plan needs case managers to help patients with complex illnesses and clinicians to provide mental health and substance abuse services.

Nevada Ranks 48th For Docs Per Capita

Such physician shortages are not confined to Nevada, but the issue is particularly bad here. The state ranks 48th in the nation for its number of active physicians per capita — largely the result of big population growth, having just two medical schools and relatively few medical training slots.

The shortage has meant doctors focus on treating higher-paying patients with private insurance or Medicare. In addition to Medicaid’s lower pay, doctors often avoid enrollees because of their higher no-show rates.

Duarte said situation worsened because the state cut Medicaid payments to providers several times in the past decade to help balance its budget.

“Cardiology, orthopedics, name the specialty and we can’t get it,” he said.  Mental health needs among new Medicaid enrollees are huge, yet he “can count on two fingers the number of psychiatrists willing to take Medicaid recipients.”

To entice more providers, the health law increased Medicaid pay for primary care doctors in 2013 and 2014 to the same levels paid by Medicare. In Nevada, that has meant a nearly 30 percent pay hike. But federal money runs out at year’s end.

Nevada Medicaid Director Laurie Squartsoff said the state may step in to maintain the higher pay rates next year. The state is also trying to add residency training slots and expand the use of telemedicine.

“The size of our health system and number of providers has not changed prior to Medicaid expansion and what we are seeing are more people who need services,” she said.

Andrew Pasternak, a family physician who works in a more upscale part of Reno, says he likely will stop seeing new Medicaid patients in January if the payments drop. “It’s a huge worry,” he said, noting his reimbursement will go from $75 for a basic office visit to about $44.  His practice now sees 400 Medicaid enrollees, up from 20 the previous year.

Sitting in Pasternak’s exam room recently, Hannah Zuniga talked about different worries.  When her husband, Paul, lost his job as an assistant manager at Home Depot in January, Zuniga was relieved when she found her family would qualify for Medicaid.  Yet while their three children could keep their pediatrician, the parents had to find new doctors.

They were given a list of providers, but several they called were no longer taking new patients. Pasternak was the fifth primary care doctor she tried seeking help for a urinary tract infection.

When she needed a hand surgeon to remove a cyst on her wrist, two physicians she called were not taking new patients and a third was backed up for three months. “It’s been very frustrating to not know where you can get care,” she said.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

A 78-year-old Vermont mother of four who helped change Medicare coverage for millions of other seniors is still fighting to persuade the government to pay for her own care.

Glenda Jimmo, who is legally blind and has a partially amputated leg due to complications from diabetes, was the lead plaintiff in a 2011 class-action lawsuit seeking to broaden Medicare’s criteria for covering physical therapy and other care delivered by skilled professionals. In 2012, the government agreed to settle the case, saying that people cannot be denied coverage solely because they have reached a plateau and are not getting better.

The landmark settlement was a victory for Medicare beneficiaries with chronic conditions and disabilities who had been frequently denied coverage under what is known as “the improvement standard” —a judgment about whether they are likely to improve if they get additional treatment. It also gave seniors a second chance to appeal for coverage if their claims had been denied because they were not improving.

Jimmo was one of the first seniors to appeal her original claim for home health care under the settlement that bears her name. But in April, the Medicare Appeals Council, the highest appeals level, upheld the denial.  The judges said they agreed with the original ruling that her condition was not improving — criteria the settlement was supposed to eliminate.

After running out of options appealing to Medicare, her lawyers filed a second federal lawsuit in June to compel the government to keep its promise not to use the improvement standard as a criterion for coverage.  They are asking Medicare to pay for the home health care that Jimmo received for about a year beginning in January 2007.

“There was really no expectation that she would improve — she was getting skilled nursing and home health care to maintain her condition and reduce complications,” said Michael Benvenuto, director of Vermont Legal Aid’s Medicare Advocacy Project, who has filed review requests for 13 other seniors.  “It shows there may be real problems with implementing the settlement at the very highest level.”

In the settlement, Medicare officials had agreed to rewrite Medicare’s policy manuals to clarify that as long as patients otherwise qualify for coverage — for instance, they have a doctor’s order for skilled care to preserve their health or to prevent or slow deterioration —Medicare must pay for therapy and other care at home, in a nursing home or office.   Each of those settings has additional restrictions: for instance, nursing home coverage still requires a prior three-day hospital admission, and there are dollar limits (with exceptions) on physical, occupational and speech therapy.

They also agreed to educate providers, billing contractors and appeals judges about the change.

Medicare officials confirmed the settlement’s review process puts appeals into the regular appeals system,  but they would not say how many requests have been received or approved.

People shouldn’t have to decline in order to get the care they need.

Judith Stein, executive director of the Center for Medicare Advocacy

Nearly five million Medicare beneficiaries received physical, occupational or speech therapy in 2011, with an average of 16 visits, according to the Medicare Payment Advisory Commission, an independent group that advises Congress.

The council’s decision makes no sense to Judith Stein, executive director of the Center for Medicare Advocacy,  which filed the original class action lawsuit with Vermont Legal Aid  and helped negotiate the Jimmo settlement.

“People shouldn’t have to decline in order to get the care they need,” Stein said. “It is ironic and also not unusual for people to find themselves in that circumstance. We are unfortunately finding providers are still reluctant to provide care because they are so accustomed to Medicare denials based on a need for improvement.”

She recommended that seniors or their families get the center’s free “self-help” packet and contact her if they still have problems accessing care at improvement@medicareadvocacy.org.

The Parkinson’s Action Network, one of the seven advocacy groups that had joined the original Jimmo lawsuit, still receives several calls a week from patients who are told Medicare won’t cover their care because they are not improving.  But Parkinson’s disease is an incurable chronic degenerative neurological condition.

“Just maintaining function is a victory,” said Chief Executive Ted Thompson.

Joshua Cohen, a physical therapist with a small practice near Chapel Hill, N.C., is worried claims he submits to Medicare may still be questioned or denied. When patients are not progressing, he tells them they can continue therapy if they sign Medicare’s “advanced beneficiary notice of non-coverage” form, promising to pay the bill if Medicare doesn’t. “That in and of itself often prevents further therapy,” he said because patients are afraid they will end up with the bill.

Gabe Quintanilla, a lawyer for the city of San Antonio, refused to sign the non-coverage forms when he was told at least seven times this year that his 92-year-old mother’s physical and speech therapy would end because she was not improving following her hospitalization for a stroke.  One doctor predicted she would continue to decline and suggested hospice care.

“The only reason I was able to keep my mother’s therapy going is because I sent a copy of [the] Jimmo [settlement] to her doctor, her insurance company and the home care agency,” he said.   His mother has a Medicare Advantage plan, a private health insurance program that must also comply with the settlement.  He discovered it “by accident,” while researching legal options on the Internet.

His mother eventually left the hospital and received follow-up care at a nursing home before returning home. Despite the dire predictions, what began as maintenance therapy has led to unexpected, if slight, improvements.

In a video he posted on YouTube, he leans in close to share his prediction that the Spurs are going to beat Portland. And she smiles, pleased that her favorite basketball team won’t let her down.

“The Jimmo settlement saved my mother’s life,” he said.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.