Sky high pricing keeping many from getting treatment for potentially deadly disease

Millions of Americans who could be cured of a potentially deadly virus are being denied a miraculous new treatment because it can cost nearly $100,000.

Both insurance carriers and drug companies alike are coming under fire for what critics say is their callous disregard for human life in the name of profits. Human life that could be saved from the potentially deadly virus, Hepatitis C.

Tamara Neilson is one example. She has always been the picture of health. An avid surfer, runner, she always ate organic, and didn’t drink.

But when some friends contracted a then-unknown type of hepatitis 20 years ago, the Mukilteo wife and mother of a teen son figured she better get tested during a routine physical, just in case.

A call from her doctor would change her life.

“And she said ‘I have some bad news for you.’ Neilson said. “‘You tested positive.’ It still didn’t ring a bell for me. ‘For what?'”

Neilson was diagnosed with Hepatitis C, a complicated and relatively little understood virus that attacks the liver.

The CDC estimates at least 3.5 million Americans have it, but it’s believed millions more are infected and don’t know it.

While most commonly contracted by intravenous drug use, many others have gotten it from blood transfusions, contaminated medical equipment, contact with infected blood, or even sharing a tooth brush with someone who didn’t know they had it.

“Patients with Hepatitis C are frequently unaware that
they have Hepatitis C infection,” said Dr. Kris Kowdley, a world renowned expert and head of the Swedish Liver Care Network in Seattle.

Kowdley is among many who’ve worked tirelessly for decades in search of a cure.

“It can significantly reduce life expectancy and can lead to end stage liver disease and even death and the warning signs may come too late for the patient to be aware,” he said.

Nielson went 20 years without any adverse effects from Hepatitis C, so she didn’t worry much about it.

But the 53-year-old started feeling sick last fall, and by this spring, she was debilitated by crippling exhaustion, along with what she calls significant brain fog leaving her grasping for words and sometimes memories. And then came painful neuropathy making it extremely difficult for the athlete to even walk, let alone run.

It’s dramatically impacted her life, keeping her trapped in bed at times, missing important life events like her son’s musical performances and cancelling family trips.

“What really scares me is that the virus appears to be attacking my body in a different way, it’s attacking my immune system,” Nielson said.

She shouldn’t have to be that scared. In the last few years, several drugs deemed nothing short of miraculous have come on the market, completely curing over 90 percent of those infected with the chronic, potentially fatal virus.

“We now have the potential to cure patients with as little as eight weeks of treatment with one pill once a day with no side effect whatsoever,” Kowdley said.

But there’s just one big problem. Gilead, the drug company that developed the two leading medications &#8212 Harvoni and Sovaldi &#8212 is charging up to $94,000 for the treatment. That’s over $1,000 for every daily pill.

Most insurance companies, Medicaid, even the Veteran’s Administration are resisting approving treatment as long as possible because of the cost.

All insurance providers use a scale that measures damage to the liver, called fibrosis. Those patients that have minimal damage are denied the treatment, leaving the virus to continue slowly attacking their bodies.

Nielson is one of those patients, denied because she only has minimal fibrosis &#8212 despite all of her other Hepatitis C related problems.

“It’s just insane to wait until [the liver is] damaged to treat it,” she said. “The liver can actually regenerate fairly well but not damaged kidneys and not compromised vascular systems. I don’t want to be at risk for a stroke for the rest of my life.”

Michael Ninburg is the executive director of the Seattle-based Hepatitis Education Project. He calls the practice of delaying treatment “unethical at best,” and has led a national effort to convince providers to expand treatment offerings.

“These drugs are within arms reach and they can see them,” Ninburg said. “They’ve been waiting for them sometimes for decades. And they’re being told they have to wait because they’re not sick enough.”

Ninberg likens it to telling cancer patients they have malignant brain tumors but they have to wait until the cancer has spread more.

Insurance providers are facing a tidal wave of patients seeking the expensive treatment, so their resistance to treating everyone at once is understandable from an financial standpoint. But at least two California consumers have sued one carrier, Anthem Blue Cross, for denying the treatment, calling it “medically unnecessary.”

“Yes, we have to be good stewards of the finances we have,” said Swedish liver expert Kowdley. “But at the same time, from a global perspective, treatment starts to look cost effective when you look at the costs of not treating those patients who should be treated.”

Gilead and other manufacturers have been the targets of frequent criticism and protests worldwide for the costs of the treatment.

Drug makers and their advocates argue the nearly $100,000 price tag in the US is needed to recoup the billions spent on research and development for the drugs and many others that never make it to market. And they argue the price is fair when long-term liver damage from the virus would ultimately cost far more in medical care.

But Gilead alone reported $3.6 billion in sales for Harvoni in just the first full quarter of 2015, after coming on the market in October.

And Ninberg is among many who say the manufacturers as well as insurance companies can still make plenty of profit without gauging customers and jeopardizing their health.

“We’re looking at two industries and patients are sadly the innocent civilians who are caught in the crossfire. You don’t have to maximize profit to have a successful company,” Ninberg said.

Neilson has filed an appeal with her insurance carrier, Premera, which includes a prescription for the medication from one of the leading hepatologists in Seattle as well as multiple doctors advising she receive treatment immediately.

“Who are these people to put my family at this sort of risk when there is a cure available,” she said. “They want me to get different insurance or die. Period.”

Dr. Kowdley says he is confident prices will come down as competing treatments gain FDA approval in the next few years. A number are expected. In the meantime, he encourages all those who meet CDC recommended categories to get tested as soon as possible.

Those categories include:

*Adults born during 1945 through 1965 without prior ascertainment of HCV risk factors

*People currently injecting drugs, or who ever injected drugs, including those who injected once or a few times many years ago.

*People with certain medical conditions, including those persons:

-who received clotting factor concentrates produced before 1987
-who were ever on long-term hemodialys
-with persistently abnormal alanine aminotransferase levels (ALT)
-who have HIV infection
-Were prior recipients of transfusions or organ transplants.