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Sunday, June 17, 2012

LOSS OF THE APF (American Pain Foundation) AND WHAT NOW?

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 There was also issue taken with the information they provided, some allegedly out of date or more positive towards narcotic meds then some research might suggest.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.



  1. I'm a chronic pain patient myself. I tried to get involved in the problems facing smaller pain mgmt facilities that may have to close because of new legislation on single dose anesthesia, and I "get" that...the procedures offer there for people like me who can't afford big hospital prices...and they'll lose the good docs that cost good $$$$...the minute I passed my petition around and people heard the dreaded "pain mgmt" word they wouldn't sign, the stigma still so ingrained and negative, and it is such a loss, such a humane loss for the pain foundation, and I did not know this... write me sometime, Julie

  2. It is sad that the term pain management is associated mostly with negative, because of the sensational media reports.
    Thanks for reading and commenting. Because my pain is from eye usage I try to restrict my commenting to here. I hope you understand. Thanks Carol

  3. Believe me when I say I know about pain and the situation legitimate chronic pain patients have everyday. I live in Florida. I became a state leader for APF in October 2011 knowing that something huge and horrible was going to happen very soon in my state. Shortly after I took this role, APF shut down.I was left with few tools on how to fight back but I learned very quickly. I used everything I could that APF had to offer and now I'm keeping up the fight.
    Anyway, my state is still in a terrible crisis mode but I have continued that fight for pain care on my own and I have a group of almost 90 and a page on facebook. I have 2 petitions out. One for Floridians and one for the whole country. Many of my facebook friends live all over the country. I give them ideas to use to help them.
    I am fighting this with every ounce of energy I have. I am losing my own health insurance in a month so believe me I know what chronic pain patients face every day. I have no job and I'm not on disablilty. I am hoping to be able to find something to do for work so I can survive while being able to fight for pain patients. Life of a chronic pain patient, while being a caregiver to my son with chronic Lyme disease is no easy task. I also have my mother that can hardly walk with me too. I feel like I am living in HELL. Now days, is not easy for anyone in pain.

    1. goldenmain, so sorry to hear all that you have to endure on you own, with any luck i will be moving to floida in about five years, what i have heard scares me to death, i have been living with chronic pain for 24yrs now, and i have a wonderful pain management doctor here in new jersey, i do what i can by signing every petition, sending everything i can through facebook, writting my congressmen, but with so many living with chronic pain it just seems we should be able to beat this stigma, but all the media sees is abuse, this is what needs to stop, i have seen the clinics in florida that give out pain meds to anyone who comes to the office. Some how Florida has to sort out the good clinics and the bad, the good doctors and the ones that cater to the abusers, until then those of us who actually have to live with chronic pain will suffer,i wish you much luck, hang in there and never give up..
      if u want to chat i am on facebook, annie skerchek,

  4. Goldenmain,
    I am so sorry for your pain and your situation.
    That you can carry on, on all those fronts is a testament to your strength and courage. Thank you for the fight you have been and are putting up for those in pain.

  5. Anniesays. Hopefully wihtin 5 years they will have found a way to let us continue to get what we needf with meds while making the bad guys the bad guys and going after them I don;t know why Fla seems to lead, or it may jusdt be the way the news hones in on Fla.
    Im glad you found a good pain doc.
    Thank you for reading, commenting and your support.