As an Amyloidosis survivor, should I pursue getting proper follow-up care?

Amyloidosis survivors require customized follow-up care for years, but many of them may not be getting it. According a major cancer study, they are calling for a "survivorship plan" to guide every patient's future health care. The same is true for amyloidosis patients. When treatment ends, people with this condition, the requirement for special needs may be just beginning. Yet the physical, psychological and social consequences have largely been ignored by doctors, researchers, even patient-advocacy groups, often leaving survivors unaware of simmering health risks or struggling to manage them on their own, according to the Institute of Medicine. Successful amyloidosis care doesn't end when patients walk out the door after completion of their initial treatments. These are some of the recommendations by the Institute of Medicine, chartered by Congress to advise the government on medical matters: Every patient completing treatment should be given a customized "survivorship care plan" to guide health care. That plan should summarize the patient's care down to drug doses, cite guidelines for detecting recurrence or new malignancies, and explain long-term consequences of treatment. It should also discuss relapse monitoring, prevention of future organ damage and cite local psychosocial services and legal protections regarding employment and insurance. Specialists and primary-care providers should coordinate to ensure survivor needs are met. Health insurers should pay for this report. Scientists must improve or in some cases create guidelines on what screenings are needed for different forms of amyloidosis and their respective therapies. Congress should fund research of survivorship care, to assess their needs and provide evidence for quality care.