1. All of our family members have had immense problems and difficulty in obtaining meaningful and humanitarian care.
2. Too many parties want to erroneously label our loved ones and family member with intractable pain as addicts, drug abusers, or non-compliant patients.
3. We are afraid that federal, state and local government agencies, medical groups, federal and state medical boards, pharmacy boards, and insurance companies are developing guidelines and policies that will deprive our family members of the treatments we know are effective.
4. Some medical institutions and physicians continually try to force acceptance of treatments we have either tried or reject. These include invasive procedures and implants, psychological and addiction counseling, and low-dose opioid or non-opioid medications.
5.There is a severe lack of internal medicine practitioners and other physicians who will provide the integrated and comprehensive treatments our family members require. The vast majority of physicians who are “Pain Specialists” are anesthesiologists or physical medicine and rehabilitation doctors who only offer invasive “interventions” or non-medical remedies.
6. Physician’s aren’t adequately trained in the genetic differences of the Cytochrome P450 metabolic pathways and how this affects medication dose and absorption in most commonly used analgesics. Most of our family members have unique genetic anomalies in this metabolic pathway, along with their painful and rare disorders. This makes standardized dosing of many medications obsolete for them. Many have been labeled as therapeutic failures in the past, before this anomaly in genetics was discovered.
7. Hospital and ER staff do not adequately understand the unique medical and genetic metabolic differences our family members have and often attempt to discontinue of change medications prescribed by qualified pain physicians upon admission. This often causes undue suffering and increased pain compounding and increasing medical complications. Our family members often experience extreme bias, and medications are often blamed for their symptoms, and medical emergencies can be over-looked.
8. Support for the families and caregivers of Intractable Pain patients is severely lacking. Resources and help with planning for the future, financial planning including long-term care needs, changing care costs and emotional support are needed. We worry about the future, and want to make sure our family members can thrive when we are gone.
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