Since the Justina case in Boston all across America Mito Specialists have quit practicing and Hospitals are closing Mitochondrial Disease Clinics.
Is there a connection?
I have a lot of mixed feelings on this topic.
We know that only about 20-25 percent of Mito patients have a Primary Mitochondrial Disease. Which means a smaller population that should have the Mito treated first and secondary issues next.
We know that literally by the day what the Mitochondrial Disease Researchers thought they knew about Mito, continues to change/evolve.
We know there isn't a cure.
We know now that lots of healthy people also have the various genetic mutations that are primary in those sick with Mito.
We have found with Abby that a lot of Drs. "seem" to find the biopsy to be more diagnostic then any genetic studies we have done. Why shouldn't the focus be on genetic's? The Muscle biopsy is not considered the gold standard in Mito medicine, but it still is the gold standard with many neuromuscular diseases.
Interestingly some hospitals now only will accept patients who have a definitive Mito diagnosis. Who defines definitive? Can definitive be primary or secondary? IS definitive only via muscle biopsy? Is definitive only definitive when their Drs. chose to label it so?
We know that illness, medications, environmental(pollution,vaccines, pesticides,insecticides,Roundup etc ) contribute to disease.
Are All Mito Patients better served using only Mito Trained Specialists? Not in our experience. There is a small percent who benefit, who need a very specialized team of Mito Specialists to provide appropriate care. But for many of Mito Patients? Often seeing their Mito Specialist yearly is enough. Abby is far better served by medicine when they don't prioritize her muscle biopsy findings. They need to weigh it into her care, but not the focus for her. For the seriously ill with Mito as a primary, they are going to be hurting without a defined team of Specialists.
We know Mito Patients are VERY expensive patients. Time, medications,vitamins,treatments and often without a positive outcome. Very few "proven" treatments specific to the population. However, this is the same case as ALS,Huntington's, Dementia,MS and many other progressive diseases and they often have Specialized Clinics. However, there is such a small population of "clearly" defined patients with a definitive diagnosis of Primary Mito I can see where it might not be enough to keep a clinic open.
Hospitals are focused on the dollar first, and patients second. Which means Drs. are focused on the dollar first and the patient second. Not a judgement, just the truth.
Why are so many Hospitals now closing their services to out of State Patients? Most States don't have any Mito Specialized care available. Which means patients won't have access to appropriate care. Fact is they put money first, you would think they would welcome more patients, not less, right?
Why are some of the Mito Specialists walking away from patient care and burying themselves in Research? Sure some have burnout, but why the mass exodus all the same year? Patients with life threatening diseases are very stressful, but if the stress of caring for the very ill was the only cause we would not have cancer Drs. There has to be more to the story then we are being told.
Why is getting a second or third opinion about rare disease diagnostics considered bad by Drs. and hospitals now? Case after case in the past 5 years of children being removed from their families because the families sought second opinions on treatments or diagnostics. How in the world is searching for the appropriate and best care for your child now become "abuse" and you lose your child? The Drs. and Hospitals are the ones calling CPS to remove these children from their parents, Why? Considering how many either don't know Mito Medicine or frankly deny such a disease exists you would think they would be referring their patients for 2nd,3rd, and 4th opinions. If they can prove another disease caused all the health issues then they can justify their denial of Mito as a disease. This issue is not just a Mito issue but lots of other rarer diseases as well.
In the past two years the research on how mitochondria impact cancer, immune health, dementia, autism, mast cells, digestive disorders is EXPLODING! Each day another breaking study is released about these little critters and how essential they are to life, yet the more they are learning via research the less specialized care is being offered. Seems to contradict the facts.
Is Obamacare causing this?
Is the CDC causing the distrust of Mitochondrial Medicine? Medical Associations? Drs. themselves?
How many Autistic patients also have mitochondrial dysfunction?
EoE,Mast,EDS,Mito,Autism, and increasing numbers of failure to thrive- what do they have in common? They are all hitting epidemic levels, 50 percent of America will be disabled before we know it. Why quit trying to prevent it?
I don't have any answers. Wish I did.
Providing fewer resources to a growing population of patients is very very BAD BAD medicine.
Sticking our heads in the sand is not going to make patients stop dying. It isn't going to stop patients from being sick.
Whether we need these clinics or not, we should all be very very concerned that Medicine is removing the focus on individualized medicine and instead focusing on the masses despite the fact that will mean more sick, more suffering and more dying.
We should be alarmed when we hear about another Clinic closing or another Dr. leaving patient care. For those who's lives depend on that very specialized care their lives are at risk. It is a symptom!
A symptom of what though?