Meeting Individuals Where They Are: A Conversation on Breaking Down Barriers to HCV Screening and Care for London’s Pakistani Community

In this brief commentary, Shabana Begum, the South Asian Projects Officer with the Hepatitis C Trust, and Graham R. Foster, FRCP, PhD, discuss key barriers to engaging the Pakistani immigrant community in the United Kingdom into hepatitis C virus (HCV) screening and care.

Graham R. Foster, FRCP, PhD:
Our experience with the Pakistani community in London is that once people were tested for HCV and knew they were positive, they engaged reasonably well with care and were keen to receive treatment. The challenge was that only approximately 20% of people turned up for testing when invited. We tried a leaflet at the local mosque asking people to get tested and virtually no one attended afterwards.

So Shabana, we have found that getting people started is the barrier. What has been your experience getting people in the Pakistani community to get tested?

Shabana Begum:
We also tried the mosque initially. I think talking to them would have helped, but most individuals were so busy coming out of the mosque that they took the leaflet but did not take any subsequent action.

After some trial and error, we found that trying to talk to them in their own language, Urdu, was more effective. When you approach someone in their own language, you will often be more successful than if you give them a leaflet that they may not be able to read. So, we tried to overcome those language barriers by going on radio and TV and communicating in Urdu. 

Graham R. Foster, FRCP, PhD:
Shabana, we have encountered reluctance from young members of communities who are worried about the stigma of being labeled as infected and worried about their marriage prospects. Is that a real fear? Is that something we need to address?

Shabana Begum:
Very much so. I encountered that just last week from a taxi driver who did not want to seek treatment because his family did not know about his HCV status, including his own wife. He expressed concern about finding marriage partners for his children if others in the community found out he was HCV positive.

Graham R. Foster, FRCP, PhD:
I did not realize that even a parent with HCV could stigmatize his or her children. What can we do to overcome those barriers?

Shabana Begum:
When we are testing in the community for other common diseases, such as diabetes, blood pressure, and heart disease, we can introduce HCV as one of those illnesses that is quite normal to talk about. If we can normalize it, then the stigma will lessen. We face a similar challenge with COVID-19 in this community. They do not want to talk about it and feel that minorities are being singled out.

Graham R. Foster, FRCP, PhD:
One concern we have had in the East London Pakistani community is that people are associating HCV with injection drug use. In your experience, does the community recognize that it is not only transmitted through drug use?

Shabana Begum:
I think the educated members of the community understand to a certain extent what the differences are between HCV infection related to drug use and nondrug use. However, those who are not highly educated learn by word of mouth, and there is a problem with disinformation. For example, I came across a myth that one can contract HCV from drinking the water in Pakistan.

Graham R. Foster, FRCP, PhD:
We tried to engage the imams in East London to help inform our campaigns, and I have to say it was variable; we had some extraordinary people, some of whom had had HCV themselves and were open to talk. On the other hand, some were not interested at all and that turned into a real barrier. Are you finding the same in Bradford?

Shabana Begum:
Very much the same. Some in the community will come forward and support you, but others do not want to be associated with me because they think that I have done something wrong to have caught HCV. We are providing the education now, but they do not want to listen. Unless someone within their family or network has been affected by HCV, they just turn the other cheek.

Graham R. Foster, FRCP, PhD:
We are trying to engage patients as their own advocates—to teach patients who have been cured of HCV to share their story with friends and family. I am not sure how successful that is. They always say they will, but I am not always sure that is reliable. Do you think that is a reasonable approach?

Shabana Begum:
I think that is a reasonable method. When we have performed outreach at community festivals, such as the Mela where people would visit our testing stands, we would talk to them, and we offer free incentives to get them engaged. We would say, “We’re here tomorrow as well. It’s free. Bring your friends and family and get tested—you don’t have to go to the GP, you don’t have to make an appointment, you don’t have to wait. We’re here now—take advantage of that.” Some would return the next day with their friends and family members to get tested. I think we must have a very opportunistic approach.

Graham R. Foster, FRCP, PhD:
It is interesting that you saw testing at the Mela as better than GP testing. One of the difficulties we have had in East London with local community GPs is that they tend to see the family as a unit, and confidentiality is within the family, not to an individual, such that if a person has HCV, the GP feels entitled to tell the parents. That has caused quite a little bit of friction. Is that still prevalent?

Shabana Begum:
I think that is dying out to a certain extent. The older generation would rather go to a GP who knows their language. The younger generation tends to seek out a different GP from their parents or even English GPs because they know the language. I think that is quite useful from a confidentiality perspective.

Graham R. Foster, FRCP, PhD:
You are heavily involved in Internet advertising campaigns. Is that a good way to engage the Pakistani community?

Shabana Begum:
It is. I have been surprised that even my own mother watches YouTube videos and shares them with her network via WhatsApp. The younger generation are of course very savvy, but I think a positive outcome of the pandemic is that a lot of the older generation have learned to become social media savvy.

Graham R. Foster, FRCP, PhD:
WhatsApp is an interesting thought; I wonder if we should be creating WhatsApp messages that people can send around to their groups. Is that a trick we are missing?

Shabana Begum:
I think so. We have done this in the context of COVID-19. We have made informative videos and shared them via WhatsApp. I had my mom make a video of her receiving the COVID-19 vaccine and we sent that around in her age group.

Graham R. Foster, FRCP, PhD:
Yes, I could envision a video featuring a patient saying, “I’ve been tested. I’ve been cured. Why don’t you get tested? It’s easy and confidential.”

Shabana Begum:
Having someone in the community who is well known would be ideal. My parents were very well–known businesspeople in their community, so her video was influential.

Graham R. Foster, FRCP, PhD:
Regarding testing, the National Health Services of England is looking at setting up an anonymous testing web portal that would include an Urdu option. Individuals could log on to the Internet to request a finger prick test, which would arrive by mail. They drop a bit of blood into the vial, send it back, and receive results via telephone. For anyone who tests positive for HCV, they are contacted with a plan for treatment. The entire process would be independent of primary care and completely anonymous. It obviously relies on people accessing the Internet and accessing testing via an unconventional route. What do you think of that approach?

Shabana Begum:
It is working with COVID-19, so I think it would work with HCV as well.

Graham R. Foster, FRCP, PhD:
That is interesting. I think COVID-19 has changed people’s approach to home care testing.

Shabana Begum:
They would rather do it in the home—in their own safe environment—rather than going out.

Graham R. Foster, FRCP, PhD:
One concern we have had is whether we should do point-of-care instant tests. We have decided against it because someone who receives a positive test result could go on the Internet and find that HCV is associated with cancer and begin to panic. To prevent this, we will phone individuals with the result if it is positive so that we can provide instant advice and support. I have to say that I think people are stronger than that. I think they can handle the news that they are HCV positive and that there is curative treatment available. What do you think?

Shabana Begum:
That is how I have been doing testing at the mosques. People there are in a rush; they will get the test but want us to send the results via text message. And I say, “I will message you if it is negative, but if it is positive, I do need to talk to you, so I will call you.” And then they give their consent.

When you compare it with COVID-19, which has no specific treatment for those who test positive, it sounds more positive that even if you test positive for HCV, we can offer you very effective treatment.

Graham R. Foster, FRCP, PhD:
I like that idea of comparing HCV testing to the learnings from COVID-19—you did this for COVID-19, you know it works, and now let’s do it for a disease with a cure. More people will die of HCV than COVID-19 (however, I think that message should be delivered carefully, as many people have lost loved ones to COVID-19).

Shabana Begum:
Yes, I agree that it should be made clear that they can be cured of HCV infection if they seek testing and treatment. It is also important to explain that if they do not know their HCV status and do not seek treatment, they could progress to cancer and possibly die. We must make the information plainly available and then let them decide.

Graham R. Foster, FRCP, PhD:
Finally, how can we help prevent transmission of HCV in the Pakistani community in London?

Shabana Begum:
I think it would be absolutely amazing if the governments of England and Pakistan would collaborate to require HCV testing of individuals traveling between the 2 nations. Everybody wants to go abroad, so why not add this test to the required travel vaccines? In addition, we should inform people about avoiding activities that put them at risk when they go abroad, such as shaving on the back streets, ear piercing, tattooing, dental work, or minor operations.

Graham R. Foster, FRCP, PhD:
That is a great idea. I am part of a charity in Karachi whose sole contribution is to visit hospitals and cut used needles in half with a needle cutter so they cannot be reused. I know there has been a huge effort in Pakistan to cleaning up the blood supply and stopping unlicensed sellers of blood. Blood, of course, has a market value in Pakistan, and people are willing to take it and sell it, and people are willing to donate. They have done a good job getting most of that under control, but there are still occasional places that will sell illicit bags of blood, and obviously that is a huge risk in that environment.

Shabana Begum:
Very much so. Obviously, we have got a lot of poverty in Pakistan as well as in India and other countries, and organ donation and blood donation occur on a massive scale. Tackling that is a huge problem.

Your Thoughts?
What barriers to HCV care have you observed in the communities you serve? Please share your thoughts in the comments section.