By Dr. Terri Lewis
Health care is a moving target these days, no matter your age, sex, disability, health care, or economic status. The best efforts to deliver better health care services to more people at a manageable cost in every state has proven to be a significant challenge in today’s politically charged environment. Some populations have become expendable, in part because they lack an organized lobby to effectively advocate for and represent their needs. People with unique health characteristics in every state report increasing difficulties in accessing health care on many levels – physician access, location, network composition, beaurocratic barriers, and access to necessary services.
Almost no group has experienced more difficulty than those who have complex health care needs. Among these are those who live with conditions associated with chronic and intractable pain. More than 200 conditions including cancer are associated with pain generation as a byproduct of the associated disease process. A number of practices have emerged that negatively impact access to care for persons with chronic pain. They include:
- The emergence of narrow insurance networks that work actively to reduce health care costs by negotiating reduced prices to physicians and hospitals. The tradeoff here is that reduced cost results in reduced services to fewer patients as fewer providers and hospitals are contracted.
- Capitation of providers on the plan results when narrow networks force all patients into contracted provider practices who are willing to accept reduced reimbursement levels. This may mean that providers choose who they will service and who they will not serve. Lengthy wait times may develop for appointments. There is no requirement to maintain a stable of health care contractors that actually matches the needs of the consumers who pay monthly fees for access. Plan coverage may be limited to geographic areas which limit access to necessary specialties, which in turn creates large out of pocket costs for consumers.
- Failure to expand Medicaid in 19 states means that large numbers of individuals cannot access local service providers unless they can negotiate for cash. The young and working poor, many of whom are working while disabled or working part time because of their disability, will be victimized by reduced health care access.
- Some states have passed pain legislation that prevents consumers for paying for pain care services with cash. Where this occurs in areas with unexpanded coverage, it may result in denial of care.
- Red flags are increasingly being used to reduce access to care for persons with chronic pain. These red flags are being applied to clinicians, pharmacies, and patients alike without concern for the conditions that may surround access to care – characteristics of the service area, the distribution of physicians and physician specialties, and the availability of insurance coverage, etc.
- In response to the spike in illicit and counterfeit drugs like heroin and fentanyl that have flooded local communities in some sections of the country, the Drug Enforcement Agency has mounted an aggressive campaign against pharmacy distributors, pharmacies and pharmacists, and prescribers who treat chronic pain. Together with changes to state pain laws, this has created conditions where some clinicians have ‘thrown in the towel.’ Clinics have closed, physicians have been arrested or retired, and the patients with complex needs are experiencing rationing. Pain care deserts are developing across some sections of the country.
- In some cases, patients with chronic pain who have been released from care because of their needs for high dose or multiple schedule III opioids have found themselves unable to replace their pain management program. Once marked and stigmatized because of their needs and characteristics, or the arrest of their clinical provider, the gap in care has become pronounced, disruptive, and in some cases dangerous. Patients have reported that their need for care for their disease demands that they abandon their pain care routine so they can receive services within their local emergency room. The substitution of opioids with other medications has reduced efficacy and increased abuse and polypharmacy.
In March 2016 the Centers for Disease Control issued guidelines for the management of Chronic Pain intended for use by primary care providers. As anticipated, these guidelines have been adopted by physicians across the board, and incorporated as requirements into state laws and federal agency programs. Insurers have acted unilaterally to reduce access to schedule III medications, by changing their cost tiers, requiring prior approval, or removing them entirely from medication schedules. Focused on reduced dispensing, state agency contract managers negotiate insurance plans without regard for patient access or impact.
The abdication of scientific, evidence based principles to the care and treatment of persons with chronic conditions has created a crisis with profound implications for healthcare. The loss of an effective physician-patient working alliance, and the substitution of a relationship framed in fear and suspicion is increasingly unacceptable.
Patients are connecting and organizing in digital space. Across the country they have voiced their concern about the unintended consequences of the War on Drugs and compared their experiences. The increasing application of forensic procedures for the treatment of chronic pain leaves many feeling victimized by the actions of others. The loss of effective healthcare strains families, economic resources, and community interactions.
Patients report that their health care costs have increased beyond their ability to manage the costs of care or conversely, their health care has dropped off entirely because physicians do not want to risk their practices. Practices are being evaluated against a design that requires physicians to defend their treatment and dispensing practices based on the characteristics of their patients – which raises all sorts of patient privacy issues.
Overdoses, drug poisonings and suicides are on the rise even as physicians have reduced the number of prescriptions written. In October, the DEA announced their plan to reduce the licensed manufacturing of schedule II medications by 25% based on the reduction of prescriptions issued. Increasingly, stigma and labeling are becoming the filter by which health care is being delivered to the community level.
Federal agencies have been particularly nonresponsive to the expressed concerns of patients and their families. The comingling of complex problems of addiction, community policing, access to appropriate health care for complex conditions, and policy making has patients and clinical providers alike alarmed. The US health care system has long abided by the standard that access to treatment for pain is a right, and that each person shall have access to the treatment which “allows them to attain or maintain the highest level of functioning possible.” Many report that reduced access to care has reduced independence and functionality.
Pain management contracts are increasingly used as a weapon for discharge and removal of choice because of the need for pain care. There is no right of recourse for the patient has lost their due process rights when errors are made. Many other civil and Constitutional rights are being violated causing many patients to remark that receiving pain management services is akin to being placed on probation for a crime they have not committed without due process.
On October 22, 2016, at 10:00 am EST, those who can find their way to the ellipse across from the White House in Washington DC will gather together to give a face to the need for a resolution of this growing problem of care access. Bring lawn chairs and snacks from 10 am to 5 pm. Meet with fellow pain patients from across the United States and listen to a range of dynamic speakers from the patient, family, and clinical communities along with advocacy leaders.
PLEASE RSVP ASAP to reserve your spot! All are welcome. Bring family members, caregivers, friends, or others who are interesting in addressing the twin problems of access to adequate pain control and the re-establishment of effective evidence based models of care.
For more information, contact the event coordinator, Lana Kirby at (317) 441-2888.
Terri Lewis, PhD is a rehabilitation and mental health practitioner who has worked in the area of community systems of care for more than 30 years. The daughter and parent of persons with chronic pain care needs, she has developed an active voice that addresses barriers to care, public policy, program evaluation, patient advocacy, and evidence based practices. She teaches rehabilitation practice at the university level for clinical training programs at Southern Illinois University-Carbondale and in Taiwan.