This month we are sorry to inform our readers about an unfortunate situation.
On the 22 May 2019, two members of the US House of Representatives, published a report claiming (falsely) that the development of two World Health Organization (WHO) guidance documents (Ensuring Balance in National Policies on Controlled Substances1 and Guidelines on the Pharmacological treatment of Persisting Pain in Children with Medical Illnesses2), was influenced by the interests of Purdue Pharma, through corrupted organizations and individuals serving the interests of that company. Among the organizations and individuals named in this report are the IAHPC, the International Children’s Palliative Care Network (ICPCN), the European Association for Palliative Care (EAPC) and others. Among the individuals it names are Dr. Kathleen Foley (Chair of IAHPC during 2005-2007) and Liliana de Lima.
The two US Representatives argue that by developing, distributing, and promoting these guidelines, the WHO was helping the pharmaceutical company increase its global market share, putting other countries at risk of replicating the US ‘opioid crisis.’ No staff member of the offices of the US representatives contacted any of us to verify or confirm the claims in their report before publishing it.
On June 19, WHO Director-General Dr. Tedros Adhanom Ghebreyesus sent a letter to the two US Representatives informing them that the WHO had taken the concerns raised by the report ‘very seriously,’ and that the agency had decided to ‘discontinue’ and ‘update’ the two guidelines. The WHO has now issued a statement on its website.
The WHO response took all the academic and civil society experts and organizations involved in the development of these now discontinued guidelines by surprise. It also shocked the professional associations, institutions, and government representatives who have used and applied these guidance documents to improve access for patients with medical needs. Both documents were developed in order to improve the situation of millions in the world who suffer from inadequate access to appropriate medications, including pain medications. The guidelines were not commercially initiated, funded, or influenced.
Given that IAHPC was never contacted by staff members of the US Representatives Office before publication of the Report, we feel that it is very important to state the facts:
The IAHPC has never acted on behalf of Purdue Pharma or any other pharmaceutical company. The IAHPC has worked hard to generate awareness on the lack of access to pain treatment and palliative care, and on the need to relieve entirely preventable health-related suffering of millions of adults and children worldwide. The IAHPC is dedicated to the advancement of hospice and palliative care in the world, through education, advocacy, and research and information dissemination. Our concern is the well-being of patients and families.
The IAHPC has consistently supported the principle of balance, acknowledging the need for governments to prevent nonmedical use and diversion, while ensuring access to opioid medicines for all palliative care patients who need them.
The funders listed in the WHO guidance documents are professional associations, private foundations, and advocacy organizations.
The IAHPC has supported and advocated for a balanced approach in designing and implementing projects and programs that facilitate an understanding of the legitimate medical need and rational use of opioids, as well as preventing nonmedical use through appropriate safety measures.
The IAHPC has worked and advocated for access to essential, affordable opioids for palliative care favouring immediate release oral morphine over commercially branded, expensive products and formulations. Examples of this work include:
The WHO has stated that it remains fully committed to ensuring that people suffering severe pain have access to effective pain relief medication, including opioids, and that it is concerned that there is very low access to medication for moderate and severe pain, particularly in low- and middle-income countries. We welcome this statement and commitment from WHO. However, we are extremely concerned that withdrawal of these guidance documents may lead to confusion and the adoption of unduly restrictive measures that will further hinder legitimate patient access. We stand by our commitment to continue working with the WHO and other UN agencies, government representatives, academia, and organizations to advance appropriate pain treatment and palliative care. We will continue to advocate for evidence-based prescribing and appropriate education of health care professionals. And we will continue to serve as the voice of millions of patients, their families, and caregivers who will be affected by the decision to discontinue the guidelines.
We have responded by developing a joint Position Statement that has already been endorsed by over a hundred organizations and institutions working in palliative care and pain relief. You can read it here. We are very grateful with the organizations that have endorsed; if you would like to endorse on behalf of your organization, please do so here. A final version, with endorsements, will be presented to the WHO at the end of this month, if not sooner.
Until next month,
Lukas Radbruch, MD
Liliana De Lima, MHA
1 World Health Organization (WHO). Ensuring Balance in National Policies on Controlled Substances: Guidance for Availability and Accessibility of Controlled Medicines Geneva: WHO.
2 WHO Guidelines on the pharmocological treatment of persisting pain in children with medical illnesses [Internet]. Geneva: World Health Organization; 2012