Mitochondrial Disease Clinics & Programs Closing

admin  ∼  March 6, 2015  ∼  Patient Consultations Education Outreach Mitochondrial disease Diagnose Test Evaluation

VMP's Dr Fran Kendall Factoid Friday Blog on Rare Diseases


Over the past 6 to 8 months, at least five mitochondrial disease clinical programs have closed their doors for  a variety of reasons. Several of the providers have decided to pursue other interests to include research and laboratory ventures. Others have succumbed to budget cuts and political pressures.

While fiscal and other factors may be contributing to the decisions of some providers to pursue other interests, the intent of this discussion is to focus on what may be the cause in my opinion for the disappearance and dissolution of the mitochondrial clinician. 

I believe there are several areas that are affecting the ability of genetics and neurology departments around the country to provide complex patient care:

1) Unrealistic and poor reimbursement to the physician or institution/hospital over care of complex patients resulting in budgetary shortfalls in departments attempting to offer these clinical services. Hospital reimbursement is based on insurance contracts and low-volume complex care reimbursement is not negotiated by hospitals or institutions as a priority with insurance companies. Very complex and involved appointments with mitochondrial patients who often have multisystem and complex issues are reimbursed at the same rate as a physician who sees a patient for a head cold.

2) Some of the changes in healthcare create punitive environments for complex care by limiting reimbursement if, for example, a very sick patient ends up being admitted twice within a 30 day window for necessary care. As changes occur in the healthcare environment due to new regulations and laws, the focus has now been placed on preventative medicine and general care for a larger population diminishing the focus from and the resources that previously were devoted to complex care. Increasing insurance roadblocks to care creating massive amounts of red tape that occupies increasing amounts of physicians/institutions/hospitals time that is not reimbursable by insurance. 

3) Managing complicated patients is also associated with increased medical legal liability particularly if time constraints allow only five minutes to see a patient regardless of their complexity. If you are a general pediatrician or an acute care center, it is much easier to see a child with an ear infection who is otherwise healthy than a complicated mitochondrial patient on dozens of medications who may have a similar illness but respond differently to medications and treatment due to an underlying disorder. In some areas, patients have reported that providers/institutions/hospitalists are informing them that they no longer see complicated cases. 

4) Several years ago, mitochondrial disease was highlighted as a red flag for childhood medical abuse in a Journal of Pediatrics article leading to a palpable increase in accusations against the parents and families of children with mitochondrial disease and dismissal of adults with mitochondrial disease symptomatology. Aside from the tragic and terrible consequences impacting affected families and paucity of care provided to adults with mitochondrial disease due to discrimination, many providers of mitochondrial care in institutions/hospitals have themselves fallen victim to attacks by their own medical staff with charges of over medicalizing their patient population. This has led to the decision of some providers or the institution/hospital to refocus their attentions on other areas of medicine.

5) Some institutions/hospitals have become self-referring and penalize their physicians for referring patients outside of their network. This creates an environment that pits, at the expense of patient care, the institution/hospital against other specialists that may be outside their network that have the appropriate skills and training. The collaborative environment between institutions/hospitals and the private sector is eroding due to economic pressures upon the institutions/hospitals.  

6) The rising use of institutional or hospitals committees that must approve testing ordered by their own specialists. These committees dilute and undermine the ability of the specialist that is on their staff to have testing performed that may be necessary for the care of their patient. Often these same tests are ordered and run without issue by physicians outside the institutional or hospital network.

7) In conjunction to this issue for mitochondrial disease clinicians is the added burden of being targeted by certain patients in the population who, while seeking medical assistance become abusive and even slanderous to providers. A physician's oath, dedication to medical ethics, and the limits of science dictate that physicians dealing with complex medical conditions may at times be forced to provide people with information they do not want to hear leading them to become angry and disenfranchised. While the vast majority of patients develop a productive partnership with their healthcare team, the negative attitude created by some individuals particularly by utilizing social media and cyber bullying has led to mistrust and even the decision by some providers to opt out of the field because of undue stress in the workplace environment.  While pioneering many areas of mitochondrial medicine throughout my career, I myself have become a victim to cyber bullying by those that place themselves in a position of some sort of authority on matters that they have little or no understanding. Dealing with such hurtful and at times slanderous statements only serves to take the physician’s already limited time, focus and energy away from patient care and fosters an adversarial relationship with the very people that are trying their best to help.  

All of these factors lead to a disinterest in the care of complicated patients and that is reflected in the diminishing number of mitochondrial disease specialists being trained throughout the country and world. Entering a subspecialty that is poorly supported following many years of expensive training and burdensome student loans is not conducive to recruitment into rare disease medicine and those entering medicine seek other areas to focus their energy and resources on.

While difficult to understand and comprehend in some ways, these are the various facts as I understand them that are impacting the mitochondrial physician community and, left unchecked, will undoubtedly lead to the closure of additional programs over coming months to years. In addition, the impact may be felt greatest on the ancillary providers who assist the mitochondrial clinician in providing care to these complex patients to include the primary care office who no longer takes difficult patients or the GI doctor who cannot manage the TPN dependent patient due to complexity of issues and other time commitments.

The question at hand for the patient community and field is what can be done? It has taken time to come to this point and it will most likely take time to reverse the trend. It can be done. Just look how far Autism has come. The areas that I see that can influence a change are:

  • Focus more onto education and awareness of mitochondrial disease in and among the medical community;
  • Generating awareness in and support from the general public, taking this beyond patients and their families through wide spread media;
  • Fair and realistic reimbursement for physicians/institutions/hospitals for providing complex care;
  • Fostering an environment of a congenial, constructive, and productive relationship between patient and provider;
  • Restructuring of medical care to focus on the support of chronic care and quality of life for rare diseases;
  • Development and use of alternative medical models that create or enhance a supportive environment.

Together we can change things for the better, but as with mitochondrial disorders there is no simple solution. It will take all of our parts. I think of how Autism has evolved over the decades from often being misunderstood, just like mitochondrial disease, to the present day and how it is very supported and understood by the general public.

The first steps are to identify and understand the challenges ahead. Then it is working toward a solution. So I challenge everyone to think – are you working in the solution or stuck in the problem? I have always focused on solutions, so join in and think how you can make a difference for mitochondrial disease. 

Sincerely,

Dr Fran Kendall

This post is not meant to be a recommendation or a substitute for professional advice and services rendered by qualified doctors, allied medical personnel, and other professional services. The responsibility for any use of this information, or for proper medical treatment, rests with you.