I am so unhappy that the American Pain Foundation (APF) closed down.
I understand the issues with the close ties to the pharmaceutical industry. My immediate reaction was so what? They are all we have. I questioned the basis behind the hoopla, especially when I found the article, written by Pro Publica, that seemed to initiate the investigation. The authors bias is apparent in the chosen title of the article: The Champion of Painkillers.(1)
In reading the article there are some things APF has done that do give me pause, a friends of the court brief, for instance, in support of a doctor who was prescribing up to 1600 pain pills in one day. Another friends brief backed Purdue Pharmaceuticals against pain patients who sued saying the company had hidden some of the risks associated with the drug OxyContin. The APF argued that all pain patients would be harmed if the patients won: the result would be all doctors afraid to prescribe opiate medication for pain patients.
I found that reasoning specious at best.
These are legitimate concerns. Maybe the ties were too close. There was also issue taken with the information they provided, some allegedly out of date or more positive towards narcotic meds then some research might suggest.
But where else would the money come from?
Many of those in chronic intractable pain cannot work, or on disability. We cannot afford to keep them afloat.
Many people do not believe there is a beast called chronic pain. They are not going to pony up.
People give to the cause of, say, cancer or muscular dystrophy because they have heard of these diseases most of their lives. They know cancer can happen to them, or has happened to them or someone they know. Jerry Lewis takes over the TV one weekend every September to raise money for the MDA (Muscular Dystrophy Association).
Celebrities come out to talk about their cancer or that of someone they love, During the telethon celebrities sing, or do a comedy act, or talk forcefully about the lives of those affected by MD.
We do not have that. Paula Abdul came on Dr. Oz. She has RSD. People in the pain world were excited. She will bring attention to our cause, they thought. I did not see the segment but all reports on the pain sites spoke of her ignoring RSD completely during the segment.
The trigeminal neuralgia association (now the facial pain associaion) had Kathryn Crosby (wife of Bing Crosby) as their spokesperson. When she went on TV, representing the TNA, she touted her book about life with Bing. Not a word uttered about trigeminal neuralgia.
What are we to do?
Many of the pain disorders have their own groups. The general pain groups that have given themselves names to imply a countrywide involvement, and do good work, work in only one or two states. As a women in pain awareness representative I have been able to get the Pa. state legislature to proclaim September as Women In Pain Awareness month (WIPA) for the last three years - but that is as far as it goes. Calls and emails to the media were always ignored.
It occurred to me a few days ago that the, I believe APF backed, National Pain Awareness Month, occurring every September, completely misses the mark. Everyone knows about pain, they do not know about chronic pain. I did the same when I requested the WIPA month. It did not occur to me to include the word chronic.
Whether the APF was wrong or not, whether the ties were so big and so close that they could not remain independent, I do not know.
I do know without them our loudest voice has been lost.
We need to find a way to come together and scream until we are heard once again.