2015 – A Twinning Update
The four-year twinning programme between the Irish Haemophilia Society and the Vietnamese Haemophilia Association (VHA) was officially completed at the end of 2014. However, due to the success of this programme and the great strides that have been made and continue to be made by the haemophilia team in Vietnam, the Society have committed to working with the Vietnamese Haemophilia Association for a further four years outside the scope of the World Federation of Hemophilia twinning programme. We continue to work to assist them in developing their capacity as an organisation and we also continue to work on specific programmes including the ‘Home Adaptation Programme’ and the ‘Micro Employment Project’ which I have spoken about in previous newsletters.
It is our belief that the optimum route forward for haemophilia care in Vietnam would include a more strategic programme from the World Federation of Hemophilia (WFH). The WFH has an all-inclusive programme called the Global Alliance Programme (GAP). This involves working with a country on several levels including increasing government commitment to haemophilia care, providing increased training for the doctors, health care workers and laboratory scientists in helping to further increase the capacity of the patient organisation and provision of factor concentrates.
In May, I visited Vietnam along with a very high-level team from WFH to access Vietnam for possible inclusion in the WFH GAP programme for 2016. The delegation comprised of the WFH President Mr. Alain Weill, the interim Chief Executive, Ms. Elizabeth Myles and the Regional Programme Manager for Asia, Mr. Robert Leung. We visited the blood transfusion hospital and the Cho Ray Hospital in Ho Chi Min city where they were able to see the reality of haemophilia care in Vietnam in 2015. We then visited some patients at home and followed this with a meeting with the southern branch of the Haemophilia Association. The southern branch of the V.H.A. have greatly increased their capacity over the last year and now have a large number of active volunteers willing to work to improve the quality of life for people with haemophilia. Following our visit to Ho Chi Minh, we then flew to Hanoi where we worked with the National Institute of Haematology and Blood Transfusion (NIHBT). The WFH delegation were given a detailed presentation on the reality of haemophilia in Vietnam. A country of 90 million people, which should have at least 6,000 people with haemophilia but where there are only 2,200 diagnosed. Factor VIII use in Vietnam is 0.07 international units per capita. Vietnam uses 6 million international units for a country with a population of 90 million people whereas Ireland is using 39 million international units per country with a population of under 5 million. There is a long way to go to improve care in Vietnam but they’re clearly making constant and incremental improvements. In 2009, factor VIII was covered by the health insurance scheme. In 2012, factor IX was covered by the health insurance scheme and in 2014 they also achieved coverage for factor VII A. In Vietnam, individuals must also pay 20 percent of the cost of their treatment including the cost of their factor concentrates. This is beyond the capability of most people to achieve. If an individual is categorised as poor then they do not pay 20 per cent, the government pays 95 per cent and the individual is liable for 5 percent. This 5 percent is often waived; however, this does not generally apply to a large number of the patients. In Hanoi, the NIHBT and the Association have now managed to achieve coverage without a co-payment for 60 – 70 percent of people with haemophilia. This is a very significant improvement in access to treatment. It is important to note that even though the use of factor concentrates in Vietnam is very low, it is still more than doubled since 2009. The Vietnamese Haemophilia Association with headquarters in Hanoi now has three branches in the south in Hai Phong in the south-west and three haemophilia clubs in Hai Phong, Hung Yen and Tai Bin. There are also three peer groups for young men with haemophilia, for mothers and for fathers and they have 30 active volunteers who provide education, support members and carry out fundraising and advocacy. Our work with the Association over the past number of years has borne fruit in terms of a more efficient system of governance, a higher number of recruited volunteers and an increased number of publications.
The delegation then met with the Executive board of the Vietnamese Haemophilia Association and carried out a detailed discussion in relation to the prospects of a GAP programme in Vietnam. Following this, we had a lengthy meeting with the Vice Minister for Health and at that meeting, the Vice Minister asked Professor Nyugen Anh Tri, the President of the VHA to write a national haemophilia programme and submit it to the Ministry. It was a very successful meeting and visit and I am confident that the WFH will approve Vietnam as a GAP country for 2016. This four-year commitment to Vietnam would further boost their continued efforts to improve haemophilia care.
While in Vietnam I also signed the formal agreement for the employment project whereby the Irish Haemophilia Society will support individuals with haemophilia and related bleeding disorders by giving small grants to people with haemophilia to start up small businesses such as repairing computers or mobile phones at home or other such appropriate employments. In addition to this, I was able to see at first hand the impact of the Home Adaptation Project when we visited a family in Ho Chi Minh City. The family have a 12-year-old child with severe haemophilia who has been confined to bed due to bleeding into his back. On the day we visited his wheelchair arrived. This wheelchair was funded by a grant from the Irish Haemophilia Society through our Home Adaptation Project and excitement ensued as the wheelchair was assembled and he was able to move around in the wheelchair. In Hanoi, we also saw a delivery of a large number of wheelchairs, crutches and portable toilets for people with haemophilia funded through the Home Adaptation Project. These might seem relatively simple devices which we would have taken for granted here for several years but they will make a significant difference in the mobility and quality of life for people with haemophilia who benefit from these in Vietnam.
Yet another successful trip to Vietnam.