Helping Hepatitis C Patients Who Are Waiting for Treatment


Many people living with hepatitis C have been waiting for years or even decades for a cure. Today, there are several drugs that promise high cure rates, yet the extraordinarily high cost of these medicines means that some patients are still waiting.

The new direct-acting antivirals (DAAs), which include sofosbuvir (Sovaldi), ledipasvir/sofosbuvir (Harvoni), dasabuvir/ombitasvir/paritaprevir/ritonavir (Viekira Pak), ombitasvir/paritaprevir/ ritonavir (Technivie), daclatasvir (Daklinza) and the newly approved elbasvir/grazoprevir (Zepatier), come with price tags as high as $95,000. The consequence of these high prices has been relatively inflexible insurance restrictions, including triage measures, enacted by many public and private payers. Some people living with hepatitis C have been denied access because of a prior positive drug screening or because they have less liver damage than others also awaiting treatment.

Therefore, even with cures available, many health care providers are still caring for patients who must wait for months to start treatment. While they wait, patients can suffer from flu-like symptoms such as fatigue, joint pain, fever, nausea and sore muscles. Rarely, patients can also suffer from itching and jaundice (yellow discoloration).

Addressing Fatigue

While some symptoms can be more complex, the most common hepatitis C symptom is fatigue, said Alyson Harty, R.N., nurse clinical coordinator at Mount Sinai Hospital in New York.

The first thing clinicians should do is to rule out other causes of fatigue, such as sleep problems, depression, stress, diet issues or other medical conditions, said Lucinda Porter, RN and patient advocate.

Porter's favorite prescription for fatigue symptoms is light to moderate exercise in short bursts, such as 10-minute or more walks in the morning, afternoon and evening.

Moral Support

"Most of these patients have been dealing with these symptoms for years," even before the new direct-acting antivirals were approved, Harty said. As far as symptom management goes, she said, "[T]here is not too much we can do other than what we've been doing all along."

A care provider's most important role is to provide "moral support" while fighting for a patient to receive the treatment he or she deserves, Harty added.

The most challenging symptom to treat while a patient is waiting for approval isn't a symptom of hepatitis C; it's the anxiety caused by the process of waiting, Porter said.

"It's hard for patients to wait," Porter continued. "It helps if a doctor is communicative, upbeat and clearly outlines how long the approval process might take."

Sometimes it can take weeks or months for an insurance provider to approve treatment. Frequent communication with a care provider can help alleviate stress and manage any other potential symptoms, Porter said. "Patients need reassurance that no one is dropping the ball." Porter also recommended support groups such as Hep Forum for patients who are anxious about treatment approval.

A Brighter Future

Patients, clinicians and advocacy groups are fighting back against treatment restrictions. In addition, the influx of new drugs on the market has increased competition and softened insurance company requirements.

Generally, this means that fewer patients are being denied treatment, said Paul Pockros, M.D., director of the Liver Disease Center Scripps Clinic in La Jolla, California. At the start of 2015, approximately 100 hepatitis C patients under his care had not filled their prescriptions because they were waiting for payer approval. Now, only about 20 are waiting to start treatment, Pockros said.

According to Pockros, securing approval for many patients has become "less of a fight." But caring for those patients who must still wait is a challenge because of the stigma of the disease, Pockros added. There are many compelling reasons -- both social and medical -- for treating patients right away, Pockros emphasized.