COPD Research- We just want a level playing field.

In May 2007 Professor Peter Barnes of the Imperial College in London authored an article titled “COPD A Growing but Neglected Global Epidemic”. In 2008 NIH (National Institutes of Health) funding for COPD was $75m and in 2018 the funding estimate is $79m. In 2016 the Lung Foundation Australia admitted there was a funding crisis for research into lung disease.

COPD mortality is expected to continue to rise in the coming years to becoming the 3^rd leading cause of death by 2030. Funding agencies across the globe continually relegate funding for COPD. In 2015 NIH funding for COPD was $97m and ranked 150^th  in research for diseases even though it was the 3^rd leading cause of death. In the same year HIV/Aids received $3b in NIH funding for 6465 deaths, ranked 14^th on the funding list. Don’t get me wrong 6465 deaths are tragic so is the difference in funding dollars.

While most researchers acknowledge the crisis in funding, they seem powerless in changing the inequities. For a patient community looking for a cure or better medications to stabilize their disease, these statistics are incredibly frustrating.

In 2010 it was estimated the costs on the United States healthcare system from COPD was $50b and rising. Here we are in 2018 with rising costs and rising death rates and no strategy to change what now seams acceptable, a funding crisis. Governments around the world fail to see the benefits not only to patients but to their budgets in investing in COPD research.

If this wasn’t enough to make even the most tolerant patient see red, then the underfunding of pulmonary rehabilitation will. Pulmonary rehabilitation has been proven to be of great benefit to respiratory patients by increasing their exercise capacity and improving quality of life. In a 2013 study it was found COPD patient’s hospital readmissions was significantly lower in the year following pulmonary rehabilitation.

COPD remains a very preventable disease and much still needs to be done in raising awareness into the risk factors for contracting this disease. Early diagnosis and treatment is crucial for new patients to maintain a good quality of life. This doesn’t mean patients diagnosed with severe COPD cannot achieve a better quality of life.

Prevention, diagnosis and management still remain the priority for healthcare professionals in their battle to stem the tide of a growing number of patients. But when you have a disease which has little recognition from the outside world these messages find little traction.

The glaring question is, why does COPD receive so little attention from funding agencies, not to mention mainstream media? I suspect there isn’t just one reason. A 2003 article in the British Medical Journal opens with this paragraph – “Respiratory physicians should take some responsibility for what could be regarded as the neglect of patients with COPD and need to raise the profile of the disease with governments and funding bodies. The aim is to prevent its cause, modify its natural history, focus research and ensure the implementation of all measures that may reduce the suffering”.

While it may be convenient to attribute blame to a particular group, it grossly simplifies the problems with COPD. Respiratory physicians, patients and in fact most people involved in the respiratory world could be attributed a portion of blame. But the blame game has never ended well when trying to fix systemic problems. The answer lies in accountability, cooperation and identifying our failings.

As a patient I’m willing to put my hand up for my own shortfalls. Starting with poorly managing my asthma over many years and compounding this with cigarette smoking. I have no doubt if I managed my asthma the way I manage my COPD I would have a very different life to what I have now. Part of my mission nowadays is to help patients improve their quality of life, so like me, they can be less of a burden on the healthcare system.

I think some respiratory professionals have become far to dependant on pharmaceutical interventions rather than prescribing strategies which are backed by science, are non-invasive and improve quality of life. How many physicians refer patients to pulmonary rehabilitation and to a dietitian early in a patient’s diagnosis? In saying this the lack of PR programs is an issue in some areas and doctors aren’t going to send a patient to a program which isn’t available.

The nutrition story is complicated, but the reality is most doctors aren’t trained in nutrition so why would they mention it to their patients? So, is this where a multidisciplinary team comes into effect? You would like to think so. But in what I have seen few MDT’s actually have a dietitian on the team. Even if there is one, it’s likely they have limited experience in formulating dietary strategies for respiratory patients.

While my comments may seem harsh, they are a reflection of what I have been told by some healthcare professionals and what I have seen at respiratory conferences. While I’m well aware pharmaceutical companies fund some research, personally I’d like to see a more holistic approach by big pharma. Given the billions of dollars they make out of respiratory patients it would be nice to see them help expand PR programs.

From a patient looking in, there does not seem to be a lot of cohesion between healthcare professionals and patient advocate groups. I believe the respiratory community needs to unite and develop a better working relationship. Patients, doctors, researchers and associated healthcare industries need to drive awareness and the need for a change to the funding disparity.

COPD has spent to many years in the wilderness and it’s time we all took a step forward, if we don’t then we will continue to climb the statistical charts which nobody wants to be the top of!