Advocacy experiences: A global perspective
It is not unusual for CAPA members to work with other arthritis advocacy groups, individual stakeholders and with like-minded organizations who advocate for the best possible care for people with chronic diseases, in fact, it is quite ordinary. Interest is generated, connections are made, networks are formed, coalitions develop and together challenges are addressed. Sometimes success comes quickly but generally movement on policy change is slow and victory occurs as a result of a lot of hard work. The Canadian experience is no different than that of other countries. This is a truth I have learned first hand.
In October I was given the opportunity to represent Canadian arthritis consumers at the Bone and Joint Decade 7th World Network Conference. It was an unexpected pleasure to be chosen to attend because I had attended the Network Conference in South Africa last year. In addition to sharing the Canadian advocacy experience, it was a time to renew acquaintances with advocates from around the world, learn of the progress they had made in the areas of MSK diseases and the challenges that need to be overcome. Sharing experiences on issues of mutual concern generates feelings of support that unite us worldwide. It empowers us with the passion to continue raising the visibility and awareness of MSK diseases and the economic burden of those diseases. Allow me to share their stories with you.
Arthritis and MSK conditions were listed as a National Health Priority in Australia in 2002. In 2006 the Better Arthritis and Osteoporosis Care Program (BAOC) received $14.8 million from the federal budget over eight years to improve the quality of life for people with arthritis and osteoporosis and those who provide care for them. The BAOC initiative is consistent with the National Action Plan (NAP) for OA, RA, and OP and the National Service Framework. A key priority under the NAP is the development of national core competencies in MSK basic and clinical science. Members of the advisory committee include the Deans from the major universities, rheumatologists, orthopedists, patients and members of the student council. Completion is expected in October 2008.
At the grass roots level, staff (people with arthritis) from Arthritis New South Wales advised that they had completed the JIA project that was discussed last year. Arthritis NSW designed and distributed a resource guide for children with JIA, their families and care providers in October 2007. The booklet is titled: Finding out your child has Juvenile Idiopathic Arthritis (JIA). A guide for teachers and students with JIA has also been developed in partnership with educators, and population health consultants. Their next initiative will focus on arthritis and pregnancy. The dedicated staff expect to have it completed for the Bone and Joint Decade 8th World Network Conference.
Kenya is engaged in processes to increase awareness of arthritis and other MSK conditions. With a population of 34 million people, Kenya has only two rheumatologists. The government is facing overwhelming demands for health services. Access to a timely diagnosis and medication are high priorities. Awareness initiatives such as public information sessions, and lectures and forums for physicians provide a solid springboard for physicians to obtain information that will lead to a correct diagnosis and timely treatment. The challenge is to interest the physicians in studying rheumatology.
In South Africa eight per cent of the health funding is allocated to HIV/AIDS. Out of forty-three rheumatologists, eight or nine practice in the public health domain. To ensure arthritis patients have a voice in policy decision-making at the government level, a coalition named PHANGO (Patient Alliance of NGOs) has been formed that has resulted in patients sitting on government committees. Although progress is being made the “source of data” presents challenges. Regardless of whether it is delivered by government or by NGOs, the data is considered biased by everyone except those delivering it.
In Sweden the focus is on rheumatic disease, back pain and chronic pain. Last year’s Black and White report that was sent to the Department of Health gained two hours of television coverage this year. The report compared the socio-economic costs to the overall system of seven patients who received timely care against those who did not. To draw attention to osteoporosis this year, Christmas cards were sent to all members of government. The cards showed broken gingerbread cookies and carried the message: If you have weak bones, they could be broken as easily as a cookie”. Merry Christmas and Happy New Year. Many responses requesting information were received from government. Awareness is slow but momentum is building.
A patient representative from the UK stressed that a strong patient voice, backed by a network of consensus leads the way to solutions. He described what politicians need from patients:
- Strong rational arguments
- Evidence to support arguments
- Human face to deliver the message
In the UK, where nine million people have arthritis, the Arthritis and Musculoskeletal Alliance (ARMA) developed standards of prevention and care in 2004. The result was public policy on arthritis and the MSK National Service Framework. The Service Framework was launched in October 2006. During the last week of October 2007, the House of Commons launched two booklets that focus on Rheumatoid Arthritis and addresses employee and employer issues related to staying employed: When an employee has rheumatoid arthritis: An employers guide; and I want to work: A self-help guide for people with arthritis. Surveys of employers and employees conducted by The National Rheumatoid Arthritis Society of the UK informed the creation of the booklets. It is interesting to note that the NRAS took the initiative to create data where none existed thus using the bottom up approach to data collection.
A patient representative from the US explained that the National Health Care budget is competing with the Homeland Security / Terrorism budget for funds. She described three awareness initiatives that focus on innovative, low cost education, prevention and joint protection programs. They include: Fit to a T; Straighten Up America; and PB&J (Protect Your Bones and Joints). For details on these programs, visit the US BJD site or click on: http://www.usbjd.org/projects/index.cfm?pg=projects.cfm .