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Research Funding Needed in Birmingham

Earlier this year, a physician from the University of Alabama at Birmingham (UAB) was on Capitol Hill petitioning lawmakers to support further funding of clinical research into idiopathic pulmonary fibrosis (IPF). This is a deadly disease which is estimated to be affecting more people every year. Currently, there is no known cure for this disease. There is an effort being made to pass the new Pulmonary Fibrosis Research Enhancement Act (HR2505), which would improve the available research, awareness and prevention capabilities of the Centers for Disease Control (CDC) and the National Institute of Health (NIH).

(see also: COPD Clinical Trials)

The director of the Pulmonary, Allergy and Critical Care Division at UAB is a man named Victor Thannickal, MD. As an expert in idiopathic pulmonary fibrosis, he was the perfect person to address Congress on this serious issue. During his speech, he put major emphasis on the importance of learning how to accurately diagnose and then treat IPF. If the proper actions are not taken, IPF can cause scarring in the lungs, which will prevent them from being able to move oxygen into the blood stream properly. Breathing becomes more and more difficult, and eventually the patient’s lungs will no longer be capable of sustaining life.

As Dr. Thannickal has pointed out, the discovery of a cure for IPF will be very difficult since the root cause of the disease is still unknown. Currently, IPF patients often have only one option available to them, lung transplantation. This is a risky procedure, and UAB happens to be one of the only centers in the South capable of performing this operation. In other words, a diagnosis of IPF is a death sentence for most patients. After the diagnosis has been made, most patients will only live for another three to five years. Dr. Thannickal has theorized that IPF is the likely result of the lungs inability to repair or regenerate itself after injury. Like many lung diseases, idiopathic pulmonary fibrosis is progressive, meaning that it will get worse over time. Eventually, it literally sucks the air out of the lung’s alveoli, and the patient suffocates to death.

One IPF patient in particular, Gary Godwin of Fairhope, AL, had to carry oxygen with him at all times, as his disease had progressed to a later stage. Fortunately, he was lucky enough to receive a lung transplant which saved his life. His symptoms first began back in 2006. After trying a number of different treatments, he decided to come to UAB in 2010. Due to his age (he was 65 years old), diabetes, and the less than stellar arteries in his heart, Godwin did not appear to be a good candidate at first. He was eventually reevaluated after receiving four stents in the left side of his heart, and he was subsequently placed on the transplant list.

After that, Godwin and his wife relocated to Birmingham in order to be closer to UAB. On May 29th, Godwin received the first call to come in for surgery, but surgeons were not able to operate due to the fluid in his lungs. Incredibly, Godwin had to endure four more false alarms before finally undergoing a successful transplant on Sept. 28, 2010.

Dr. Thannickal states that about one in every thousand who need a lung transplant are able to get one, and researchers are still astonished by just how quickly this disease can kill. As his wife would say, “my husband was able to beat the odds in more ways than one”. So, Godwin has decided to share his story, and he is writing a book about his personal journey with IPF. The book should help to raise more awareness of this deadly disease and will hopefully help some other IPF patients.

Developing more awareness of idiopathic pulmonary fibrosis is pivotal for developing the necessary resources to understand it. There are a number of IPF affiliated patient groups working to increase research funding throughout the country. Based on a comparison with other rare diseases, research on IPF is still underfunded. Current estimates show that about 75 percent more people are diagnosed with IPF each year compared to other rare diseases like cystic fibrosis (CF) or amyotrophic lateral sclerosis (ALS). IPF is also estimated to kill about 40,000 people every year, which is the same number killed by breast cancer annually. Breast cancer research receives more than $600 million every year, while IPF research currently receives less than $30 million.

As a member of the NIH-sponsored IPF network, UAB has been involved in a majority of the clinical trials conducted for IPF. Thannickal has stated that this research has been able to reveal biomarkers and some new therapeutic targets for this disease. Another benefit of this research is that it has brought to light some of the problems with the current treatments for IPF. The results of these clinical trials have shown that these treatments, which have been used for the last 30 years, have some negative effects. Thannickal stated that these drugs were ineffective at best, and in some instances they were even harmful. In a recent press release from NIH, results showed that the placebo patients actually did better than those taking the standard treatments for IPF.

At the moment, the specific cause of IPF has still not been identified. Fortunately, the current theories point to a number of potential factors. Researchers are investigating the role of environmental exposures such as cigarette smoke and some other pollutants. A patient’s age and their genetic disposition are also believed to play an important role in the development of IPF. As Dr. Thannickal has noted, the incidence of IPF seems to be increasing every year. This rise could be caused by the overall increase in environmental pollutants that we are all being exposed to. These developments are just the tip of the iceberg, and there is still so much left to discover.

Thannickal has been really excited about the new insights which are being unveiled by these latest clinical trials. He states that they are learning more about what really works and what doesn’t for IPF patients. For example, in the past, physicians would try and treat the inflammation which occurs in the lungs of IPF patients. Now, they are treating the fibrotic component of the disease instead. Research has shown that this may be the most effective way to treat IPF patients. Thannickal and UAB are pioneering the research effort in Birmingham, and they will continue to press on. Every step forward will help to improve the lives of patients all over the country.

 
 

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