This will confirm our telephone conversation of today wherein we discussed the fact that I am an advocate for chronic pain patients and am with Veterans & Americans United for Equality in Medical Care.
I explained to you that I see and hear from patients every day who have gone from fully functional to bedbound due to the Country’s complete disregard for any humanity to be offered to the chronic pain patients. We discussed, and you agreed – and in fact said that you were aware of the facts – that people who have severely debilitating disease processes or injuries are being denied necessary medication which would enable them to lead a somewhat normal life, to the extent possible. However, in view of the CDC guidelines and resultant media hype, compounded by the Surgeon General sending out letters to physicians asking them to continue to further reduction of pain medication from patients who are using them without abuse, without problems, and in full compliance with the law in all respects.
As a result of the lack of action on the part of the governmental agencies involved (the CDC and HHS), people with brilliant minds are losing the ability to walk. They are completely bedbound. People are being abandoned by their physicians due to the physician’s fear of the DEA and at least one of those people was sent home from his doctor without medication, and due to the fact that he wasn’t properly titrated and was sent home without medical supervision, he aspirated as he vomited and underwent a massive stroke. He died at the hospital leaving two daughters behind. And I am just one of many advocates. THERE ARE 116 MILLION CHRONIC PAIN PATIENTS IN AMERICA and a very large number of advocates who try to help each one.
I also explained to you that yesterday I was contacted via phone by a hysterical Anita Lincavage, of Pennsauken, NJ who was afraid her husband was going to commit suicide. He is 5 years status post renal transplant and suffers from severe peripheral neuropathy, rheumatoid arthritis, and a host of other ailments. He was in ICU in December when his medicine was cut to 50%. He is now off all pain medication and is completely bedridden. In fact, he has pressure ulcers (bed sores) on the bottom of both feet. She cannot take him to the emergency room, because it is known that in New Jersey, no pain relief will be afforded; rather he will be put into a lockdown facility. You gave me no suggestion as to how to help these people, other than the suicide hotline.
As I took it from our conversation, you are perfectly aware that these instances are happening routinely. However, we discussed the fact that one reason the chronic pain patients can’t get any emergent action on the National Pain Strategy is because the chronic pain community patients are all ill and physically unable to show a strong showing in something like a Rally. You indicated there was no funding for the National Pain Strategy and that absent a very large showing of people in severe pain and suffering along with hundreds, or thousands of letters, that no rush would be placed on the National Pain Strategy. We compared it to the attention “Black Lives Matter” when they were able to form a strong protest. The difference is, of course, that they are not the frail, the injured and the devastatingly ill.
Mr. Novotny, I would like to reiterate that people are choosing suicide over the extreme amount of pain they are being forced to undergo due to the apparent misunderstanding of the nation of the CDC’s guidelines. I reminded you that twice now the Surgeon General has sent letters to every doctor in America telling them to cut yet again, the physicians’ prescribing “privileges”.
Medical care must be individualized, not mandated by “state averages” or whatever percentage the DEA informs physicians that they are to cut their prescribing practices by. No consideration is given to the geographical area that the physician serves, nor the types of patients the physician serves.
The physician/patient relationship with most chronic pain patients at this point is broken. You agreed with this, yet would not agree to put any emphasis on it unless proof was brought to you. You did, however, admit to having seen “alot” of these types of stories and hearing alot from many people in the chronic pain community. You acknowledged that you were perfectly aware of the severity of the problem. Basically, and I’ll paraphrase this” but the message was “unless and until you bring an enormous number of people who have already lost functioning and/or present thousands of letters (although you didn’t indicate how many letters you DO have) – I guess the message was unless we brought an enormous number of letters to you at one time, nothing would be done.
I don’t believe we even got into the problems created when the DEA shuts down large pain management centers where 20,000 plus chronic pain patients are turned to the streets because the facility is closed and the patients’ medical records have been seized by the DEA. It is no secret that there aren’t enough pain management centers in these areas to accommodate this number of patients, so it is well known that a fair percentage of people will die (and have died, as in the Hamilton County, Indiana shutdown) – and the government will make no attempt to help these people.
I think we all know that patients such as what I am describing here are NOT contributing to the nation’s heroin crisis. We also discussed the fact that the numbers were skewed because all heroin overdoses, regardless if it’s mixed with illicit drugs or prescription drugs, are wrong. The statistics given to America on this are completely inflated, yet the stigma has now been attached to the chronic pain patient.
We further discussed that the chronic pain patients are not advocating for overprescribing, illicit use, or anything other than usage, along with other treatment modalities, for pain for which there is no other reasonable treatment available, then opioids sufficient to enable one to “attain or maintain the highest level of functioning possible”.
I asked for a meeting on October 21, 2016, since I will be there for a rally on October 22nd. Please respond as to the meeting on Friday, October 21st. How many people will it take for the Rally to be a big enough number of attendees that we can get some immediate attention for those who are right now considering suicide as a way to end the suffering? Could you give me a ballpark figure so that I can provide the necessary “proof”?
Would you or any of your colleagues be willing to speak with the chronic pain patients who come to the rally on October 22nd? Maybe we could set some type of threshhold – say if we can get 600 people in the southwest quadrant of the Ellipse would any of you be willing to come speak with us?
#Veterans And Americans United for Equality in Medical Care