According to IAPO, the mandate of the current IGWG was too narrow and should also have addressed the realities facing people suffering from chronic illnesses and infectious diseases in developing countries. IAPO also sharply criticised the WHO for not including patient representation in IGWG discussions.
The current IGWG mandate was to focus on two of the barriers to patients in developing countries receiving effective healthcare treatment – namely, lack of innovative new drug therapies for several specific infectious diseases, and lack of access to the new drug therapies that have been developed.
Ghanaian “think tank” expert on IGWG, Franklin Cudjoe, stressed that eliminating drug patents would not usher in a new era of global health and prosperity. Along with IAPO, Cudjoe pinpointed inadequate infrastructure, and not price, as being the main obstacle blocking access of high-quality medicine to poor countries.
He described how imported drugs often sit for months in Africa's dirty, non-air conditioned storage facilities – either losing quality or expiring before reaching patients. Then there is the problem of understaffed hospitals, inadequate equipment and an intermittent electricity supply. With roads often being in disrepair, access to healthcare facilities can also be difficult.
In July 2006, the director for WHO's HIV division made a similar statement with regard to the pandemic of AIDS in Africa: “It is very obvious that the elephant in the room is not the current price of drugs,” he said. “The real obstacle is the fragility of the health systems. You have health infrastructure that is dilapidated, and supply chains that don't exist.”
IAPO representatives concurred that access to healthcare and medical innovation are intrinsically linked – that without adequate access, innovation generates no benefit. However, they also agreed that without innovation, access leads to limited outcomes.
Global patient concerns were also expressed about the limited range of infectious diseases being targeted by IGWG which includes six tropical diseases, HIV/AIDS, tuberculosis, malaria and diarrhoeal diseases.
A civil society commentary on the WHO IGWG on Public Health states that according to WHO data, tropical diseases are decreasing in prevalence in developing countries, and constitute only a fraction of mortality even in the poorest countries. Although HIV/AIDS, TB, malaria and diarrhoeal diseases have higher mortality rates, the same report points out that there are available treatments, often at zero prices, for each of these diseases. The report states that these four diseases have also received donor funding to the order of $41.8 bn since 2004.
Bearing these significant expenditures in mind, worldwide representatives at IAPO stressed that diseases causing the most disabilities or deaths in developing countries, such as cardiovascular diseases, stroke, diabetes, cancer and inflammatory arthritis, had been excluded from the WHO's list of so-called ‘neglected diseases'.
This issue is of particular significance in South Africa, where there are many more people suffering from life threatening conditions other than AIDS, yet insufficient attention and funding has been allocated to these killer diseases.
By not directly addressing the impact of ‘excluded diseases' in developing countries, there is the potential to create conflict between patients with chronic illnesses and patients with infectious diseases. Safe and effective treatments are needed by all of them in addition to access to adequately trained medical personnel, clean and well managed healthcare facilities and caring support services.
Until two years ago, patient based NGOs in South Africa dealt with the government and other health institutions on an individual basis. With the formation of The Patient Alliance of NGOs (PHANGO) in 2006, 27 different healthcare NGOs came together in order to negotiate as a unified patient front with the various players in the medical industry
Although it is still early days, access to key decision-makers in healthcare has been encouraging. PHANGO's input has been actively included in the Health Charter and in consultative forums at provincial and national government level. PHANGO was also asked to make a presentation at the Human Rights Commission. PHANGO is represented on the law, ethics policy committee of the SA Medical Association
In the private sector, PHANGO is involved in dialogue with the Board of Healthcare Funders and The Council for Medical Schemes. Educational workshops have already been held in collaboration with the CMS on the issue of prescribed minimum benefits which are at the heart of many confusing issues in medical insurance. PHANGO is soon to launch a medical aid education tool in the near future which will help patients in coming to a decision about the right health insurance cover for them.
Although this is an encouraging start, South African still has a long way to go in terms of upgrading access to basic healthcare. Rural access is particularly poor. There are also insufficient numbers of patients having basic and critical screening tests at primary healthcare level for silent, life-threatening diseases like cervical cancer, hypertension and diabetes. Access to medication is often erratic and patient compliance remains a big problem.
Looking at the Millennium Development Goals, it is commendable that the government is committed to providing safe potable water to all by 2008. However, South Africa is not on track when it comes to reducing child mortality, improving maternal health and combating HIV/AIDS, malaria and other diseases.
While it is critical that South Africa upgrades its overall access to healthcare, PHANGO nevertheless considers access to new drug therapies at affordable prices to be a critical issue. Dr Vicki Pinkney-Atkinson, chairperson of PHANGO says: “What is lost on higher pricing should be made up by higher volumes and to achieve this negotiations with pharmaceutical companies are key.
Although the IAPO response to the IGWG mandate suggests that access to basic healthcare comes first and that access to new technologies is secondary in importance, we believe that both objectives need to be addressed concurrently in South Africa.
Access to new technologies is rarely a luxury. A case in point is the new, but currently unaffordable vaccination against the viruses that are responsible for cervical cancer. If this were available to all school girls it would have a marked effect on the numbers of women who develop this most common form of cancer in South Africa.
New technologies can also provide relief, and a significant saving in future medical costs, to treatment resistant patients with chronic diseases. An example here is the use of biologics for treatment resistant patients with inflammatory arthritis. Previously doomed to a life of progressive deformity, continuous pain, joint replacements, disability payments and secondary complications like heart disease and stroke, these people can now be helped by drugs that switch off the inflammatory process, either halting the disease or putting the patient into partial or full remission.
The problem of course is cost and the challenge for both pharmaceutical companies and the government is to find a cost-effective mechanism for making the newer, life-saving drugs available to those who really need them.
This was the thrust of the IGWG mandate and hopefully, creative solutions will soon be found. The challenge in negotiating better prices for innovative drugs is to provide pharmaceutical companies with an adequate return on investment, thereby ensuring that R & D continues.
The IAPO meeting concluded that innovation and intellectual property rights should be part of a broader discussion on access to healthcare, which needs to be addressed urgently in a parallel process to the IGWG's deliberations on a global strategy and plan for Public Health, Innovation and Intellectual Property.
Jo Harkness, CE of IAPO, also urged the WHO and its stakeholders to ensure that patient representatives were given a central role in future discussions.
Aletta van der Watt is a founder member of PHANGO (the Patient Health Alliance of NGOs in South Africa) and the Advocacy Director of the Arthritis Foundation of South Africa. She attended the IAPO meeting in Geneva as the South African PHANGO representative.
For further information, please contact:
Aletta van der Watt, IAPO member, committee member of PHANGO, and Advocacy Director of The Arthritis Foundation of South Africa. Tel. 083 270 4842. Email: aletta@boma.co.za
Linda Trump of CAT Communications. Tel: (011) 485 2406. Cell: 082 341 7128. Fax: (011) 485 2409. Email: ltrump@telkomsa.net
Kailas Bergman
011 784 2598
kailas@magna-carta.co.za
