Shaping Change: A World Health Organization Policy Paper on Idiopathic Pulmonary Fibrosis Funding Challenges

In our previous post, we delved into the impact and significance of policy papers concerning scientific research. Today, I'll provide you with an example by discussing a specific policy paper that I wrote focused on tackling the funding inadequacies related to Idiopathic Pulmonary Fibrosis funding. My paper is addressed to the World Health Organization, and is as follows:

Executive Summary: 

This policy paper is directed to the World Health Organization (WHO) Director-General, Dr. Tedros Adhanom Ghebreyesus.  WHO needs to better organize the distribution of money to underfunded diseases to achieve funding proportionality. The lack of global coordination and a limited flexible budget ultimately limit treatment research and development, especially for diseases like Idiopathic Pulmonary Fibrosis(IPF). The proposed alternative is the creation of an International Funding Consortium (IFC); by effectively combining global resources and experiences, the IFC seeks to advance research, improve patient care, and raise worldwide awareness, consistent with the WHO's objective of ensuring everyone has access to a healthy and productive life.

Problem History

• Approximately 60% of WHO’s budget comes from direct member state contributions, 14% from the United Nations, and 10% from charitable foundations, mainly the Bill & Melinda Gates Foundation. Only 10.2% of this funding is flexible.

• IPF receives only a small percentage of research funding ($18 million vs. $85 million for Cystic Fibrosis and $48 million for ALS) while being five times more common. 

• The budget imbalance deteriorates public awareness, making global fundraising initiatives more difficult. Due to a lack of worldwide coordination, current policy cannot effectively address changing global health issues.

Problem Definition

• The focus of IPF funding is shifted towards the interest of larger charity organizations due to the need for more flexible financing and overseas contributions.

• This severe problem causes significant delays in progress, inhibits knowledge of and treatment for uncommon diseases like IPF, adversely affects patient care, and puts a more significant strain on the healthcare system.

• Strict financing criteria prevent professionals who could significantly impact the development of treatments from doing so, thus hindering comprehensive research on IPF. These funding requirements may also deter talented people and enthusiastic researchers from participating in IPF research. Modified funding requirements should improve IPF research progress and enhance patient outcomes. 

Alternative Solutions/Policies 

• The first alternative solution would be to maintain the status quo.

• The second option is to create an International Funding Consortium, a cooperative global endeavor that pools resources and knowledge to advance research, patient care, and global awareness at a faster pace. The IFC seeks to address global health concerns with a more comprehensive and integrated strategic model.

• The third solution is establishing regional health coalitions to pool resources from neighboring countries to address common health challenges. While encouraging regional collaboration, the regional health coalitions’ focus on neighboring countries could impede a broader global perspective.

Recommendations 

• The second alternative is recommended. Establishing an International Funding Consortium offers a needed, more global solution. The collaborative nature of the consortium aligns with the WHO's global health mandate, positioning it as a key player in addressing this underfunding challenge.

• Costs associated with consortium establishment are outweighed by potential benefits, including accelerated research, improved patient care, and enhanced global awareness.