AUSTIN — When Peyton Howell learned a medicine could cure the hepatitis C that has ravaged his liver since birth, he thought it was too good to be true.
Sitting beside his mom last fall at a doctor’s office in Austin, the 17-year-old had just learned his condition was urgent. Peyton’s liver is on the brink of cirrhosis and getting the drug is his best chance to reverse
the damage that can lead to cancer, liver failure and even death.
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He left the office with a prescription, but it turns out that Peyton was right to be skeptical.
Texas Medicaid refused to pay for it, then rejected Peyton again when he appealed. The state won’t cover the $75,000 drug until Peyton turns 18 in March, a milestone that also marks the end of his Medicaid benefits.
States concerned with cost have limited which Medicaid patients are eligible for the pricey drugs that cure hepatitis C — the most deadly infectious disease in the U.S. — only to roll back some of those restrictions after being sued by patients and shamed by doctors.
Texas remains among the most strict, denying the medicine to all but the sickest patients who already have significant liver damage, and those who can demonstrate they have been sober for three months.
Delaying treatment means patients can keep spreading hepatitis C through their blood, by sharing needles or passing it onto their children.
“It is so silly and inconceivable,” said Dr. Jose Luna, who works at an El Paso clinic where nearly a dozen of his Medicaid patients have been denied the drugs because their condition was not yet serious enough. “It’s like someone telling you ‘I have a patient with diabetes, but I’m not going to approve medication until we amputate a foot.’”
Phil Waters, with the Harvard Law School Center for Health Law and Policy Innovation, was more blunt.
“If you wait to treat people, you are perpetuating the spread of this deadly virus,” he said.
The state estimates more than 580,000 Texans may be infected with hepatitis C. Texas Medicaid has spent nearly $155 million on drugs to cure the disease in the last two fiscal years. It’s not clear how many patients the state has denied.
As a group of three dozen medical professionals lobby the state to loosen its restrictions for Medicaid patients who need the drugs, the Texas Health and Human Services Commission says it is reconsidering the matter, though a spokeswoman would not provide more details.
Peyton is already sick enough to qualify and with each day of delay his liver gets closer to failure.
Perversely, he could have a better chance at getting cured with no Medicaid coverage, by going directly to the pharmaceutical companies for help.
Uninsured Texans, no matter how sick they are, can apply for free hepatitis C drugs through the companies’ patient assistance programs. Neither of the two largest manufacturers of the drugs, Gilead Sciences and AbbVie, would reveal how many people they’ve helped in Texas.
The uninsured “are the easiest patients to treat because there’s no restriction in access to drugs,” said Dr. Imtiaz Alam, who is medical director of Austin Hepatitis Center and Peyton’s doctor. “Medicaid is the most difficult.”
A quiet epidemic
Peyton was diagnosed with hepatitis C when he was 10, after a nurse practitioner noticed he was overweight and called for blood tests. Peyton remembers thinking he was going to die while the doctor explained the disease to him.
An estimated 3.5 million Americans are infected with the disease, but it is difficult for public health officials to pin down an exact number because many people don’t show symptoms and can go years, or even decades, without realizing they’re sick.
The opioid crisis is exposing more and more young people to hepatitis C. Starting in 2010, new infections nearly tripled over five years, largely due to injection drug use, according to the U.S. Centers for Disease Control and Prevention.
Peyton is part of that wave.
A baby with tufts of brown hair that had a habit of sticking straight up, he was also born addicted to heroin and cocaine and suffered seizures from withdrawals.
His mother, Teresa, and her then-husband adopted Peyton from state foster care when he was nine months old. State officials warned the couple that Peyton might suffer future health problems and gave him Medicaid to help, Teresa said.
Years later, Peyton learned his birth mother suffered from the same disease and likely passed it onto him. She also hasn’t been treated, he said.
Florida, New York among 17 states with looser restrictions
The first drugs offering a cure for hepatitis C came on the market about five years ago — at a hefty cost. The sticker price for one 12-week course of Harvoni came in at nearly $100,000.
Worried a run on the medicine could bankrupt Medicaid programs, states set limits to treat only the sickest first, said Matt Salo, executive director of the National Association of Medicaid Directors.
"This is all a balancing act," he said. "Over time, as the drug price has gone down, as the fear of everyone with a condition showing up to demand treatment hasn't exactly borne out ... you are seeing pretty much every state loosen some, many or all criteria."
Alam, Peyton’s doctor, is one of those leading that push in Texas.
Federal records show he was paid more than $220,000 by one hepatitis C drug maker, Gilead Sciences, and received nearly $27,000 from another, AbbVie, last year. National Public Radio first reported this week on payments from drug makers to doctors nationwide who advocated for Medicaid to cover their products.
Alam said part of the money was for research and doesn’t affect his advocacy
, or his decisions on patient care. “I choose the drug that is the most appropriate for the patient,” he said.
Texas has loosened some restrictions for Medicaid patients, who include low-income children, mothers and adults with disabilities. They no longer need a prescription from a specialist, for example, which was a hurdle for people in rural areas.
Still, Texas is one of roughly a dozen states that require Medicaid patients to have serious liver scarring to qualify for the drugs, according to a report by the National Viral Hepatitis Roundtable and Harvard’s health policy center. The majority of Texas patients who don’t meet that criteria are denied, unless they have cancer or have had a liver transplant, physicians said.
Lawsuits have forced some change. At least 17 states have no restrictions requiring liver damage before a patient can receive the drugs, including Florida and New York, according to the report.
Denials demoralize patients who may not be able to have a doctor check them each year for signs of new liver damage, physicians said.
“A lot of these Medicaid patients have trouble with transportation, have trouble keeping a phone number, they get lost in the system,” said pharmacist Jenny Dau, who works with Alam and manages the HepCare Specialty Pharmacy in Austin. “There’s really no way to find them if they don’t call.”
It’s not only Medicaid. Access to the hepatitis C drugs varies across insurance plans.
The Teacher Retirement System health plan reported covering more than 460 people and denying 84 over the last two years.
Public and private insurance plans denied more than one third of patients who were prescribed curative hepatitis C drugs between 2016 and 2017, according to a recent study by the Infectious Diseases Society of America.
Peyton waits for March, and one more try
Peyton doesn’t look sick. Nevertheless, Teresa swears she can sometimes see a yellow tint in his tan skin, a hint of jaundice that is a symptom of hepatitis C.
The disease doesn’t affect Peyton day-to-day, but he takes precautions. Drawing blood can release the virus. Peyton doesn’t share razors with his two brothers, and takes care not to cut himself.
He mostly forgets about being sick, until last year, when he learned the seriousness of his condition during a trip to Austin to meet Dr. Alam. Left alone in the office to sit with the startling news, Teresa began to sob.
Texas Medicaid authorizes one drug — Harvoni — for children over age 12. But that medicine doesn’t effectively treat the type of hepatitis C that infects Peyton. Alam instead prescribed a different brand that is federally approved to treat Peyton’s disease, but not yet approved for minors. Since Peyton was one year away from adulthood, Alam said he felt comfortable with the choice.
Texas Medicaid administrators did not. Superior HealthPlan, the private insurance company Texas pays to manage Peyton’s care, denied the prescription based on his age, according to documents shared by the Howells. The family appealed to the state for a fair hearing — a conference call with a hearings officer who doesn’t have to be a medical professional. The state upheld the denial in May.
Superior did not return multiple requests for comment. Texas Health and Human Services Commission spokeswoman Kelli Weldon said the commission can’t comment “on an individual client’s case due to privacy laws.” She also wouldn’t say whether there are any circumstances when a child who doesn’t meet age requirements would be approved for coverage.
Recently, Teresa learned that Peyton’s Medicaid benefits end the month after he turns 18. That gives Peyton a two-week window in March
—when he’s both an adult and has Medicaid coverage — to try again, she said.
If that fails, Teresa isn’t sure what comes next, or what happens if Peyton’s disease lands him in the hospital, or worse, ahead of his birthday. Some pharmaceutical companies won’t give patients free drugs if Medicaid has already denied them, Alam said.
Peyton, who starts his senior year this fall at a Waco high school, has faith in his body. He’s been fighting hepatitis C all his life, he says, he can make it. But he can’t understand why a few months make such a big difference to the state.
“If you’re sick, you should be able to get cured,” he said.
Source : https://www.expressnews.com/news/politics/texas_legislature/article/Patients-get-sicker-as-Texas-refuses-to-cure-them-13089981.php