Dear COPD Coach,
Why aren’t there more drugs out there for COPD? Other people with COPD that I talk with seem to all take the same medications. Also, I am always hearing about some big advances in research with other diseases, but I don’t hear much about COPD. What is going on?
—Looking for Answers
This is a topic that is very much a concern for those in the COPD community. However, the answer is not really an easy one to explain, but I will try.
COPD is the third leading cause of death in the U.S., and unlike many of the other diseases, the numbers continue to rise. As far as new medications, much of this development depends on research. What is interesting to note is that despite this dubious distinction, COPD consistently gets the lowest levels of research funding. Simply put, without the research, cures and new treatments are slow in coming.
Even with research, drug makers must face many hurdles in order for their product to make it to market. As a part of this process, the drug companies must do extensive trials in order to establish such things as product safety, dosage, side effects, interactions with other drugs to name a few. In order to conduct these trials, the investigators must establish a protocol and once approved must recruit a cohort, which is a group of patients who are willing to participate. Establishing a trial and recruiting a cohort can be difficult, expensive and very time consuming. Some cohorts have taken as long as a year to recruit, and often are the biggest obstacle for drug makers to overcome.
Once the study has been completed, the findings and data are presented to the Food and Drug Administration (FDA), who reviews the material, and either approves it or recommends further testing or documentation. A public hearing is held to discuss the findings and final approval is either given or denied. It is not uncommon for the entire process to take years. Many potential drugs do not pass the trial stage! While we don’t want a dangerous drug to be rushed to market, we would certainly like to see development and approval movemuch more quickly! !
So the question remains, what is the answer?
In short, the responsibility lies with many.
As far as research, the government bears a great deal of responsibility. Often times other diseases, affecting far fewer people get more research dollars simply because their patients are more vocal. As far as new treatments, much of this is shouldered again by the government’s lack of providing research dollars. The pharmaceutical companies in their search for such treatments are understandably concerned with costs of development as well as potential profits. The costs involved with bringing a drug to market are staggering.
The responsibility also lies with us, the patients. For too long we have sat back and allowed events to take their own course. In short, our voices were never heard. There are things we can do to change the process, and make the system work for us! What are they?
- Get involved in advocacy efforts. Programs such as Operation 435 looks to reach out to all 435 members of the Congress to educate them on COPD and to make our views known. It requires nothing more than occasional phone calls or letter writing, but can – and will – make a huge difference.
- Join a COPD Registry. The COPD registry puts together a membership of patients interested in learning about or participating in clinical trials for new drugs, treatments or research. Joining the registry is simple and free. Being a member of the registry will keep you informed about promising new developments. As a member of the registry you are not required to participate in any trial; that decision is left to you and your health professional.
- Contribute! Even a few dollars can make a huge difference in speeding up and developing cures.
What can one person do? A lot. You can, with just a little effort make a difference!
For more information on what you can do, call the COPD Information Line at 866-316-COPD (2673) and tell them you want to get involved! You can also visit our website at www.copdfoundation.org.
Ask the Expert is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice.
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