Sun Luqing founded Home for Hemophilia Patients in 2004 alongside a group of his peers living with Hemophilia. As the biggest organization working on Hemophilia issues in Shandong Province, China, Home for Hemophilia has filled a gap in the region for over a decade. The organization has 3 staff and 4 key volunteers, serving more than 400 community members.
After Sun Luqing completed Asia Catalyst's Yearlong CBO Training Program in 2014, Home for Hemophilia Patients crafted an advocacy plan to respond to changes in Shandong Province's Rural Cooperative Medical System (RCMC). China began the RCMC in 2002 to strengthen its rural health system, improve access to health care, and reduce the financial burden of medical costs for the rural population. By the start of 2013, the System is said to have reached 805 million rural dwellers (98% of the total rural population). However, certain restrictions to the System--and Province-level policies--left some marginalized groups without appropriate coverage.
Enter Sun Luqing and Home for Hemophilia Patients.
At its inception, the RCMC offered patients in Shandong around 80% reimbursement of all medical expenses. In early 2015, sweeping changes were implemented in Shandong. Hospitals were categorized into first, second, and third tiers, with reimbursement rates fixed at 90%, 70%, and 55% for inpatient treatment respectively. In addition, Shandong also implemented financial caps. This meant each patient could not receive more than 50,000RMB (US $8,061) for outpatient and 190,000RMB (US $30,600) for inpatient treatment annually.
The danger of the shifting system for people living with Hemophilia was immediately clear to Sun Luqing. Zero first tier hospitals (90% reimbursement) and exceptionally few second tier (70%) carried medicine for Hemophilia. Most patients thus would have to go to the third tier hospitals. Treatment for Hemophilia is costly, and people living with the disease often face complex economic hardship.
To combat the changes, Home for Hemophilia Patients developed a petition to change the RCMC to offer greater coverage, and to include additional necessary medicines in the reimbursement plans. The CBO circulated the petition to its constituents, gathering nearly fifty signatures from community members.
On January 12, 2015, the group submitted the petition to policy makers at the local Shandong Medical Insurance Bureau. In February, just one month later, the Medical Insurance Bureau committed to discussions on the request to include additional medicine in the reimbursement plan. Then, on April 2, 2015, the Bureau gave a statement that it would increase the outpatient reimbursement financial cap from 50,000 RMB (US $8,061) to 1.5 million RMB (US $241,000) annually. In addition, for inpatient treatment--the Bureau said--the third tier reimbursement rate would rise from 55% to 60%.
By April 15, 2015, one city in Shandong has already been able to implement these changes; some people living with Hemophilia there have already been able to more readily and affordably access necessary medical care and treatment.
The work is far from over but, in China, incremental victory is often the surest path to success.
Sun Luqing says, "As a result of our CBOs advocacy, the outpatient reimbursement rates for Hemophilia patients in Shandong Province have drastically increased. This will help most people living with Hemophilia to easily and affordably get treatment. As for our organization, we'll keep conducting advocacy on the issue. We know that can create real progress."