Comparing East vs West in Hep C Patient Understanding
In this month’s column we look at Hepatitis C and examine the differences (and similarities) between the causes of non-adherence in China and the US.
In this month’s column we look at Hepatitis C, an infectious disease spread mainly by blood-to-blood contact which affects the liver. We recently conducted research amongst Hep C sufferers in China and the USA. Although there are differences in the way patients from these countries feel about their disease and their experiences of having Hep C, they share commonalities in terms of the problems they encounter on their patient journey.
First of all, because Hep C often remains asymptomatic for many years, the virus can go undetected for a long time. We found that only 16% of US patients and just 4% of China patients seek direct help because they suspect they might have caught an infectious disease. Only a third of patients are aware that by participating in high-risk activities such as sexual activity and intravenous drug use they could be putting themselves at risk. The majority of patients in both markets are diagnosed through routine blood tests or a blood test given for other reasons (for example, blood tests are required in China when getting married or joining the army). This means that many patients fail to present until they are at a more advanced stage in their illness. It also means that diagnosis can come as quite a shock.
Patients in the USA are concerned about passing the virus onto others and the long-term effect having Hep C will have on their health. Christopher, 50, from the US was diagnosed nearly 10 years ago. He openly admits he was a heavy drug user, and knows this was his route of infection. He says, “a few years after my diagnosis, I really started to see the signs of the hepatitis C. I didn’t realise how much it would affect me”. He is suffering adversely with his disease and has fatigue, pain associated with his liver and severe depression. When talking about this, he says, “I was depressed anyway, but I didn’t want to be this depressed. I can’t work anymore and sometimes I cannot do simple things in the day. I just want to go back to how I used to be, living a full life.”
“‘I feel other people discriminate against me […] I find it hard to communicate with other people’”
In China, patients are more concerned about people finding out about their illness and being treated differently. One patient we spoke to who had contracted Hep C from an infected syringe when donating blood, said that friends and colleagues were unwilling to come close to him or eat with him at work. He said“I feel other people discriminate against me … On the one side I can’t get close to others as I am afraid I’ll infect them and on the other side they are also afraid I will infect them... I find it hard to communicate with other people”.
Secondly, our research found that even when diagnosed, many patients are not necessarily being treated. There are two reasons for this. In the US, patients are being “warehoused” whilst they wait for new treatments to be made available. A new generation of protease-inhibitors (PIs) which come with fewer side effects are currently in the final phases of development. A range of interferon-free regimens are also being developed, which will be even less invasive. Many physicians are encouraging patients to wait for these new drugs to become available, if appropriate, before starting treatment. For example, George, 69, from the USA, is not currently being treated as his doctor has encouraged him to wait until new products are available to him. He says, “My doctor tells me to hold the fort as there is something for me in the pipeline.”
In China, these new drugs will not be launched for some time. Patients are not being treated because they feel their symptoms are currently “too mild”. Zhang-Wei, 30, from China, was diagnosed with HCV 12 years ago, after contracting it through drug use. He is quite content about not receiving treatment (a joint decision between him and the doctor) as he is pleased to be able to save his money. He says he would only change this attitude if his condition worsened. He says, “when my condition gets worse, I know I have to receive treatment. My doctor will discuss the treatment with me, and I know I will have to accept it in order to live.”
“Pharma companies with Hep C treatments have a number of opportunities to influence patient outcomes at key stages in the patient journey”
The decision not to start treatment is understandable. The treatment programme is very intensive and comes with many side effects, and we highlight this as the third roadblock to effective outcomes. The treatment programme lasts a long time and carries a high pill burden. Patients have to be prepared to experience chronic fatigue, muscle ache, depression and anxiety, insomnia and headaches. For patients in China, who may also be self-pay, treatment also carries a high cost burden. If a patient is not covered by private medical insurance, they may be unable to afford it. Unsurprisingly, many patients in our survey had not been able to comply with the programme at some stage, with one quarter of US patients and one third of patients in China stating that the side effects had been worse than they expected.
Pharma companies with Hep C treatments have a number of opportunities to influence patient outcomes at key stages in the patient journey. They can help to raise awareness about the disease so that people present earlier. Increased awareness could also help to break down misconceptions about Hep C and reduce the discrimination experienced by patients who have been diagnosed, particularly in China. They can help physicians educate recently diagnosed patients about their illness and about the benefits of undergoing treatment. To influence earlier treatment they should be mindful that both the patient and the physician will make decisions about treatment, and both will need to be convinced of the benefit of doing so. Finally, pharma can help physicians set expectations about the treatment programme and ensure that patients have a support network in order to help them adhere over a long period. For patients in China, pharma has to convince the patient of both the benefits of treatment and of the effectiveness of the drug they are given in order to convince them to spend money on it. They may need to work with financiers in putting together a payment programme to help patients overcome affordability issues.
Contact Mary Assimakopoulos firstname.lastname@example.org for more information.
Living with Hep C is an online patient survey which was undertaken amongst 611 patients diagnosed with Hep C in the USA and China. In-depth follow-up interviews were conducted with a small sample of patients in both markets. The survey was carried out by the Research Partnership.