The first step for getting proper care for your loved one or family member is to get a diagnosis with an updated ICD-10 code. Fight for your diagnosis! It is every important going forward that underlying conditions and disease processes are correctly diagnosed. Your loved one or family member cannot receive meaningful pain care without a diagnosis.

Why is this listed under advocacy? It is important that you state what underlying health issue your loved one or family member is struggling with when you advocate for them, including trying to find physicians who will treat them. This is also important when writing letters to policy makers, it’s important all concerned understand there is a disease process that is generating the painful condition.

We write letters and make phone calls and try to meet with our local representatives, federal government, federal agencies, commissions, federal, state, and local legislators, universities, medical boards, etc..to keep them informed and advocate about the issues our family members face. Below are some ideas to include in your phone call, letter writing and face to face meetings. We need to be visible to all parties as they haven’t been including us in all the new policies.

LETTER WRITING:

Include these in your letters:

UN Says Untreated Pain is Inhumane and Cruel

With holding pain care is tantamount to Torture UN Document 

The Protocol of Montreal -Pain Treatment as a Human Right

Letter Writing and Legislative Contacts, Ideas:

Look up your Congress Members by State

You can use our format and make it personal-remember we are  educating all concerned parties-many through media think anyone with pain is an addict, so we need to shed light on the other side of the story. Start with your state medical board.

Dear __________,

As the (parent, spouse, friend,) of a person with a rare disorder (_________) ,  ( I,they) have have to take these medications because (my, their)  ( disease ) causes Intractable Pain.  (I, we ) (am, are) very concerned about the unintended consequences of various efforts under way to combat the prescription opioid drug abuse crisis we face today.

[INSERT PERSONALIZED PARAGRAPH HERE – For example:  My wife has (___ Ehlers-Danlos connective tissue disease, Arachnoiditis, post TBI____)  and experienced increasing pain after( _____), and was further injured by ( PT, Surgery, Spinal Cord Stimulator, an epidural shot, multiple epidural shots, etc_______) to try to relieve pain, and regain function and quality of life.  Opioid medications have been life saving for (me, her, him___ ),  (as I, he, she) now has severe 24/7 intractable pain, and has tried and failed many different options. Opioid medications are the last resort for (________) ( I , she , he) (am, is) current stable and have a good quality of life, in spite of (my, her, his)  disease  because of these medications..If they are taken away ( I, she, he) will have no quality of life and might die because of the severe effects of 24/7 Intractable Pain on my bodily systems.

It is critically important to recognize that there are two separate and urgent issues involving two distinct groups: those who are abusing drugs and need treatment, and those who are benefiting from chronic pain treatment and have become stable and productive because of their long-term opioid medications. Most of the recent government position papers and policy directives concerning the use of opioid medications – as well as frequent coverage in the media – have focused on opioid abuse and addiction. We’ve only seen an occasional brief mention about the many chronic pain patients benefiting from these medications. Very little attention has been given to whether these patients are going to be able to continue their much-needed medications if more and more restrictive prescribing guidelines are enacted.

Therefore, _______, I ask for your help in 3 ways. First, please ensure that Federal agencies, state and local legislators, pharmacies, medical boards, etc,  etc.. do not impose restrictive opioid prescribing guidelines that fail to address the medication needs of long-term chronic Intractable Pain patients. Second, please support exemptions for people like our family members, who by no fault of their own so not fit the “one size fits all” model of pain care, and thirdly,  provide training for physicians who can be licensed to prescribe non-standard dosages of medications, including high-dose opioids for chronic Intractable Pain patients who need them.

 What do you intend to do to help us?

Sincerely,


Dear____,

I write to you today as the family member of a (Ehlers-Danlos, CRPS, RSD, Adhesive Ararachnoiditis___ ) patient and also as an advocate on behalf of many other patients and families who are facing the same challenges my family is facing. The disease (Ehler-Danlos, Adhesive Arachnoiditis, RSD, CRPS) causes 24/7 Intractable pain and they have to take opioid medications. They have tried and failed all other options and this medication is needed for them to be able to be functional and have quality of life.

We know that some government agencies, corporate medical groups, and insurance companies have been developing guidelines that would deprive our family members of the treatments we know are effective and that are being used responsibly. Government agency and media attention has been exclusively focused on addiction, which is a completely separate issue from chronic pain treatment. We want to make sure that efforts to combat prescription opioid abuse don’t deprive our loved ones of the much-needed pain treatments we know are effective. Our family members suffer from severe underlying illnesses that are in many cases incurable,  and the safe continuation of appropriately prescribed opioid pain medications is their only hope for a somewhat normal productive life in spite of their underlying illnesses.

In the new policies being developed and issued by the Department of Health and Human Services, the Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services, the FDA, State Medical Boards and other agencies, no provision is being made for long-term treatment of intractable pain patients with rare diseases and devastating injuries. Leaving them to suffer in pain is both dangerous and inhumane.

Therefore, _______, I ask for your help in 3 ways. First, please ensure that Federal agencies, state and local legislators, pharmacies, medical boards, etc,  etc.. do not impose restrictive opioid prescribing guidelines that fail to address the medication needs of long-term chronic Intractable Pain patients. Second, please support exemptions for people like our family members, who by no fault of their own so not fit the “one size fits all” model of pain care, and thirdly,  provide training for physicians who can be licensed to prescribe non-standard dosages of medications, including high-dose opioids for chronic Intractable Pain patients who need them.

What do you intend to do to help them?


or:

Dear_____

Our family members with (__rare disease, injury that causes Intractable Pain) have already had immense difficulty obtaining meaningful and compassionate care. Many of us have to travel long distances at great expense for our loved ones to receive care. There are only a handful of intractable pain specialists currently treating patients. There is a severe shortage of knowledgeable physicians to treat these complicated pain patients, who have failed standard care and require opioid medications to have a reasonable quality of life. Most pain management clinics are staffed with anesthesiologists who focus on treatments such as epidural injections, invasive procedures, and surgical implants, which haven’t worked for these severely ill patients, and sometimes cause more harm. These physicians generally decline to prescribe opioid medications, even for those who suffer from long-term intractable pain. Many doctors who previously cared for chronic pain patients are no longer treating pain because of scrutiny and pressure from the Drug Enforcement Administration.

Many steps can be taken to improve pain care in America now. First, we must ensure that well-intended government policies and prescribing guidelines do not unnecessarily restrict the use of opioid pain medications for people who truly need them and use them responsibly. Please do not disregard the medical needs of chronic Intractable Pain patients due to the very small percentage of people who have substance abuse issues. Through no fault of their own, our family members have been stricken (name disease) that causes extreme pain and is currently incurable.  Our family member suffers from genetic malabsorption issues of Cytochrome P450 enzymes (name which-example CYP2D6- Ultra Rapid, etc..) that affect their medication metabolism. Often they need non-standard dosages of medication to achieve any analgesia. This can happen to anyone. We would like to see a skilled chronic and intractable pain specialist in every community. We would like our family members to have access to qualified physicians who can provide integrative, multi-faceted, standard and non-standard pain therapies including non-opioid medications and life-saving opioid medications at necessary doses. We urgently need insurance coverage for the medications, therapies and treatments needed for our family members to maintain a reasonable quality of life. We would like to see specialized programs to train physicians in the treatment of chronic and intractable pain in every medical school.

Most importantly, we need trained, licensed physicians who are qualified, recognized as experts, and specifically enabled to prescribe whatever treatments or medications they deem necessary for intractable pain patients without interference from regulatory agencies, pharmacies, or insurance providers. Without such specialists, under treated patients will continue to suffer and some will die from the physiological impacts of living with inadequately treated pain.

End:  Always end with with “an ask”….

Therefore, _______, I ask for your help in 3 ways. First, please ensure that Federal agencies, state and local legislators, pharmacies, medical boards, etc,  etc.. do not impose restrictive opioid prescribing guidelines that fail to address the medication needs of long-term chronic Intractable Pain patients. Second, please support exemptions for people like our family members, who by no fault of their own so not fit the “one size fits all” model of pain care, and thirdly,  provide training for physicians who can be licensed to prescribe non-standard dosages of medications, including high-dose opioids for chronic Intractable Pain patients who need them.

Thank you, and remember… chronic Intractable Pain can happen to anyone. No one asks for this. We are counting on you to stand up for our family!

Sincerely,

Your name__

 

 

DISCLAIMER: This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We cannot and do not give you medical advice. The information in this website should not be considered complete. Information obtained on this website is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.  If you think you may have a medical emergency, call your doctor or 911 immediately. FIPR- Families for Intractable Pain Relief does not represent to be an authority, please contact your physician. We share information from other organizations, advocates and or websites.