Member Best Practices
House 086, China
Experiencing difficulties in finding information about Hodgkin lymphoma (HL) led Hong Fei Gu to start House 086 in March 2011. The office is located in Beijing, the capital of China.
“I had HL and I could not find any information or patients like me so I set up this organisation to connect with others like myself,” said Hong Fei. When said in Chinese, House 086 means lymphoma house.
“The idea was to give patients more knowledge and confidence about their lymphoma,” he said.
While the organisation’s initial focus was HL, it now focuses on all lymphomas. Of the 40,000 members registered with House 086, approximately 50% have diffuse large B-cell lymphoma.
Hong Fei is the Founder and Chief Executive Officer of the organisation and has six full-time staff working with him who are either former patients or family members.
“In addition to the full-time staff, we have some volunteers and there are two part-time staff. One of the volunteers helps me with mailing information to members and the other one helps out with our website,” he said.
Access Issues to Treatment Centres
Every year, there are nearly 100,000 new lymphoma patients in China. While there are 661 cities, the main treatment centres are located in Beijing, Shanghai and Guangzhou, which are the most developed areas.
“Patients living in these cities will receive better care than those living in more remote areas because doctors in those areas lack experience,” said Hong Fei.
Patients can travel to the main centres for treatment but this can be challenging.
“In China, going to the big city for treatment is discouraged as there are so many people already there. As well, it’s not easy to transfer your insurance coverage from where you live to the big city. Patients will have to pay their own bills as they won’t be covered by insurance,” he said.
As well, local hospitals may be penalised if patients want to go to a city in a different province for treatment. While most people have health insurance to which they make financial contributions along with their employers, it only covers the inexpensive or older treatments.
“Many patients don’t have enough money to go to another city for treatment. If you’re rich, it doesn’t matter,” he said.
Lack of Access to New Medicines
New therapies are both expensive and not readily available.
“To pay for medicines, some patients have had to sell their homes,” said Hong Fei
Those patients who can may go to India or Hong Kong to purchase the newer therapies and then bring them back to China.
“Many doctors in remote areas only know about CHOP (cyclophosphamide, doxorubicin hydrochloride, vincristine, prednisolone) or ABVD (doxorubicin, bleomycin, vinblastine, dacarbazine) and there are very few doctors who have experience with the new medications. Some patients end up taking the new oral medicines without any supervision which can be very dangerous,” he said.
Some doctors will have gained experience through participation in phase III clinical trials.
“Until now, few phase III trials were available in China because of very strict policies and a very lengthy application procedure resulting in many pharmaceuticals companies not willing to apply for trials. However, that may be changing as the government appears to be more open to having them available,” he said.
How House 086 Supports Patients
Given these challenges, House 086 undertakes a number of steps to help patients, especially those living in areas further away from the main treatment centres.
“Patients can mail their medical reports, including information on their pathology, to us and we can ask professors to review them. This second opinion is then sent to the patient who can take it to their local doctor,” said Hong Fei
In an effort to make new treatments available, House 086 undertakes a number of steps including writing to both the China Food and Drug Administration, the regulatory approval body in China, and the agency providing insurance, as well as approaching pharmaceutical companies and having them approach government on behalf of House 086.
“Patients with chronic lymphocytic leukaemia and mantle cell lymphoma are hoping to have ibrutinib available soon while patients with a B-cell lymphoma are hoping to have rituximab covered by insurance throughout the country,” he said.
Information Sources for Patients
House 086 has a number of venues from which patients can get information.
“Our online forum is for patients and their families. While there are lots of discussions on treatment, patient stories are very popular. Patients also like taking photos of themselves and posting them to show how well they look once they’ve finished treatment,” said Hong Fei.
Among the many videos on the organisation’s website, over 60 focus on lymphoma and another 20 on patient stories.
“In 2016, Julie Vose, the President of the American Medical Society of Oncology, did a video for us on lymphoma while she was in China. It’s been viewed a billion times,” he said.
House 086 also holds annual lymphoma event days in the three main cities. Approximately 300 people attend each one. For the thousands of patients who can’t attend, they can watch live broadcasts of the sessions through House 086’s app.
“At these half-day meetings, patients share their stories and doctors hold quizzes to test patients about their knowledge of lymphoma,” he said.
Goals for 2017
Hong Fei hopes to hold more event days in the coming year in other cities and provide more online patient education through the WeChat group. WeChat is China’s version of WhatsApp.
“There is an innate idea in China that joining a clinical trial is really to be a lab rat. So we need to do something to help patients understand the benefits of participating in a clinical trial. This is challenging,” said Hong Fei.
Working with the Lymphoma Coalition (LC), Hong Fei hopes to be able to communicate with more patient groups who have more experience.
“Globally, I see there are many more subtypes of lymphoma but we don’t know how to organise by subtype and I’m hoping LC and its members can help us work this out,” he said.
Many thanks to you, Hong Fei, and your team, for all your efforts to help patients with lymphoma receive the care they need.
July 19, 2017