MITO HOPE and HELP - Reaching out to individuals living with Mitochondrial Diseases

  -NEWS-
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CALL TO ACTION!
We've kicked off our 2016 New York State Legislative efforts and we need 
YOUR HELP!
Below are a number of ways you can get involved
Please send me your MITO stories.  We want legislators to know what it is like to live with MITO.  Describe your struggles associated with with this disease; insurance company denials, financial issues, lack of appropriate medical care and support services, etc.  Although our current proposed NY State MITO legislation only addresses the MITO cocktail it's important the we educate those who have it within their power to help us.  These efforts will lead to futher assistance and services but only if you get involved and make your voice heard!

New York State MITO Community; 
We also need for YOU, your family members, friends, co-workers and supporters to continue to contact your New York State legislators today!   
Please ask them to support proposed MITO legislation: 
Senate Bill S3250A and A5174A in the Assembly!

The link below will take you to an updated NY State governmental website, which will provide you with the ability to follow the progress of our efforts, find your legislators contact info. , view the complete language of our proposed MITO legislation and so much more.

The most effective means is to send them a letter via regular mail.






 

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To read the full story follow this link:   
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Today is a very important day for our ENTIRE MITO COMMUNITY
no matter where you live!

Below is a link to the first ever WORLDWIDE Mitochondrial Disease Patient Registry.

You are encouraged to visit the site and share your information.  
It is our MITO Communities best unified effort and chance for improving care, developing new treatments and someday finding a cure for MITO!



In children, mitochondrial disease is more common than cancer and muscular dystrophy, combined. 

Despite this few physicians recognize or fully understand mitochondrial disease!  Treatments, appropriate medical care and support services are extremely limited!  

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Date: 9/8/14

Advocating for Children with Rare and Complex Diseases
Health Homes and Medicine's Odd Couple

As a caregiver of two children with rare and complex needs I frequently find myself frustrated with our balkanized and specialized system of health care. In my time the practice of medicine has gone from trusted physician who stopped to see you on his way home to a system that cares not where and how you live. 

If truth be known our progress has been outstanding in many areas of medicine; I recently had a hip replacement-the outcome was flawless. My youngest special needs granddaughter owes her life to the spectacular advances in infectious diseases, antibiotics and tube feeding; and the oldest experiences a rich life because of the changes in cultural mores regarding the developmental disabled.

But the stunning changes in medicine rely on the stunning changes in the many branches of science. Yet as science has failed to find the unified theory of matter; medicine has failed miserably in the unified field of health care delivery. Surely the priority given to the unified care of the human body should outrank the care and repair  of things less complicated and more mundane. Alas that it not so. My guess is  the coordination and integration of a one stop one shop car dealer service center beats the health system any old time.

Those who bear the greatest burden of these inefficiencies are medicine's
odd couple
; the odd couple is the patient with complex needs and the physician who would like to coordinate their care. In today's health care market they are all too often at odds with one another, rather than the couple advocating for a more efficient way to deliver care.

Health Homes--A Place for the Odd Couple to Speak Up 

The forum for the odd couple is now; we are at a crossroads for redesigning health care care in New York State. We are in the midst of Medicaid redesign. And it is state's medicaid program where we have the opportunity to install the architecture to  serve optimally, produce better outcomes and save as well. Roughly 5% of the children on Medicaid comprise 50% of the cost; this is not an homogeneous population; it is a vast array of often long term, chronic, complex and vexing conditions, known well only to those who care for those children in homes and hospitals. We will not be served well if we do not elicit help from the ranks of those who toil with complex care. They are easy to overlook as they usually very busy. It is within our reach to have great outcomes; models in other states have proven so. 

A recent report from a North Carolina medicaid pediatric complex care program demonstrated extraordinary results: s
o far,  staff have documented a 20% reduction in average inpatient length of stay for ventilator-dependent patients, a 36% reduction in re-admissions during the
first month after discharge, a 26% reduction in re-admissions during the first year after initial discharge, a 55% reduction in overall re hospitalizations, and an 11% reduction in emergency
department visits.  (Source: 

Co-management of Medically Complex Children by Sub-specialists, Generalists, and Care Coordinators Stiles, et al. Pediatrics 2014; 134:2 203-205)


Ed Fennell
Founder, NYSRDA

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This link will take you to a summary of the 2014 UMDF Symposium  held June 2014 in PA. 
Thank you to Kristi Wees for compiling this information and sharing!!!








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For those of you who don't know the Pelletier family and why MITO HOPE and HELP is continually featuring their story on our website please read;
Justina Pelletier is a fifteen year old girl from Connecticut who has mitochondrial disease.  Like so many MITO families, including ours, the Pelletiers must travel to Boston to receive the specialized, coordinated medical care MITO patients require that is not available to them locally. 
In 2013 when Justina became ill, and suffered with increased GI problems, she was taken to Boston Children's Hospital because her GI doctor had recently moved from TUFTS medical center in Boston to Children's hospital in Boston. 

Chaos ensued when a few physician's at Boston Children's Hospital decided they disagreed with Justina's diagnosis of mitochondrial disease.  She was kidnapped from her parents, locked in a psychiatric ward and remained there for over a year with little to no justification.  Proper protocols were not followed and the whole inconceivable traumatic event has left Justina and her family separated.  In addition Justina has not received the essential care she desperately needs for her mitochondrial disease. 

Sadly Justina and her family are not alone.  A large number of families, including my own, have been subjected to similar torment by some of Boston Children's Hospital physician's.

We stand, as a unified MITO Community, to put an end to this senseless and detrimental treatment of MITO patients.





4/28/14
Mike Huckabee continues his fight for Justina and her family!


4/7/13 - The link below will take you to part one of the Mike Huckabee Show, which aired 4/5/13 on FOX in support of Justina Pelletier and her family.


Link to part two of the Mike Huckabee Show on FOX aired 4/5/13





3/26/14 update
The link below will take you to a youtube video of the Dr. Phil Show, where the Pelletier Family was featured this past Monday 3/17/14.  IT'S A MUST WATCH!





 From the BLAZE: Justina  Pelletier
YOU MUST WATCH and help spread the word!




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UNDERSTANDING MITO

The Podium Understanding mito

By Cristy Balcells |      January 07, 2014


A family walks into the world-renowned Boston Children’s Hospital, hoping to find a successful course of treatment for their acutely ill child. Thousands of families carry the same hopes through those same doors every day. But, this time, the family, which drove more than 100 miles to see a specialist about their 15-year-old’s chronic digestive troubles, was stonewalled and ultimately accused of abuse. Although the teen was being treated by a respected doctor at a Boston teaching hospital and her sister struggles with the same genetic problem, the parents were charged with medical child abuse for over-medicating and over-treating the girl’s symptoms. Stripped of custody, the Massachusetts Department of Children and Families admitted the severely ill child to the hospital’s psychiatric ward for 10 months. Since then, her health has only worsened, and her visits with family have been controlled and limited by the state. This nightmare is the real-life experience of the Pelletiers of Hartford, Conn., whose 15-year old daughter, Justina, was diagnosed by a leading expert with mitochondrial disease. On Jan. 10, the fate of her custody will be decided in a Boston juvenile court. Unfortunately, this case is not uncommon; rather news of such conflict between parents and major medical institutions go mostly untold. MitoAction, a nonprofit working to improve the lives of mitochondrial disease patients and families through education, support, and advocacy, receives several phone calls a month from desperate parents across the country who say they are being investigated for, or charged with, medical child abuse. What is it about mitochondrial disease, or “mito,” that is having this effect? Chronic complex diseases continue to baffle the medical community despite an increase in diagnoses of rare disorders such as mito, autism, PANDAS, and others. It’s easy to blame the patient or family when traditional approaches fail. An ongoing national survey of thousands of mito families proves that this is not a singular problem. Over 100 parents report having been accused of making up their child’s symptoms, seeking unnecessary treatment, or abusing their children by “over-medicalizing” their condition. Understanding the waywardness of mitochondrial disease is key. It is an invisible invader. Symptoms include: poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, and kidney failure. One day symptoms can be mild with patients seeming “normal.” The next day they may be severe, incapacitating the patient. The cellular misfiring undermines one system and then another. The erratic appearance of symptoms leads some medical professionals to assume the parents instigate their child’s ill health. Moreover, diagnosis is difficult, expensive and requires the finesse of an expert geneticist or metabolic specialist. In Justina’s case, Children’s doctors questioned her diagnosis, her symptoms, and her psychological well-being. What was a medical condition then mushroomed into a legal battle. At MitoAction, we believe education will bridge the gap between patients and the institutions and agencies that serve them. MitoAction has developed a task force of medical and legal professionals committed to learning more about the disease and preparing themselves to treat and advocate for patients. Doctors and nurses from around the country will attend MitoAction’s conference on Feb. 8 in Los Angeles to deepen their understanding of the disease. Internationally, physicians and researchers agree that 1:2000 people will develop mitochondrial disease. While today there is no cure, there is a growing body of research supporting clinical trials and drugs to treat the disease. Support and education are critical at this stage. Having more mito-informed medical staff in the community will be a game-changer. We foresee a day when these mito-educated case managers will work as liaisons between family and doctor to document and assist in the child’s care so parents are not left managing many aspects without assistance. As a society, we cannot be short-sighted about the small cost of such moderate interventions given the horrifying cost to a child caught in the midst of such a nightmare. Cristy Balcells is executive director of MitoAction — Mitochondrial Disease Action Committee — of Boston and author of “Living Well with Mitochondrial Disease.” She is also a nurse and parent of a daughter with the disease.

12/15/13 - Below is a link to the Pelletier Family's story


12/16/13 A link to part 2 of the Pelletier Family's ordeal by The Boston Globe

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More on Boston Children's Hospital, EVERY MITO Family needs to read!!!


12/21/13 - Latest update on the Pelletier Family's ordeal


12/29/13- More support for Justina and her family








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THIS IS IMPORTANT TO EVERY ONE OF US IN THE MITO COMMUNITY!
PLEASE TAKE ACTION!!!
12/6/13
UPDATE: 15-year-old girl held at Boston Children’s Hospital against parent’s will still not allowed to go home

Last month, Glenn shared the stunning story of Justina Pelletier, a 15-year-old girl who has been stuck in a hospital for the last nine months after the medical facility took custody of her when her parents argued against her diagnosis.
The hospital claims that the parents over-medicalized the girl, leading them to take custody. The parents have provided ample evidence that every time they’ve taken their daughter to the hospital or to the doctor, they did exactly what the doctors told them to do. But now the family finds themselves in a bitter dispute to get their girl home. It’s been ten months since they lost custody, and following the latest court hearing, Justina was still not allowed to go home.
On radio this morning, Cristy Balcells, executive director of Mitoaction.org, who is working with the Pelletier family to help them bring their daughter home, joined Glenn to discuss how Justina is doing and how people can help the Pelletier family. Learn more about Christy’s organization and how you can help HERE.
Listen to the interview below. Applicable audio begins around the 1 hour 34 min mark:

Read a transcript of the interview below:
BALCELLS: Thank you so much, Glenn, and thank you so much for helping to bring this issue to this level of awareness. It’s really heartbreaking.
GLENN: This is — this is not — this is not the only case, and we’ll get into that. But you have — since we started talking about it, you’re getting calls from people all over the country saying, “This is happening to me too.”
BALCELLS: It’s overwhelming. It’s phenomenal. You know, we had high hopes yesterday because so many people have actually come forward to share their story and we felt like we had such a huge show of support from families, both in Boston and around the country, particularly who have had this type of experience with a child with a rare chronic disease at a children’s hospital, where everything that the parent was doing was called into question and the parent was left powerless and was basically accused of harming the child when they were just trying to do the best they could to make their child better.
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GLENN: I tell you, this is — this is criminal what’s happening. Cristy, explain — explain, if you can. Tell quickly the story of what happened yesterday and what this means for the family.
BALCELLS: Well, here’s what happened yesterday. Nothing. It’s so incredibly frustrating. We had really — and thought that we were going to see some progress because what else could we decide after 10 months of holding this girl captive in the hospital. Really, you need another week to get some more information? I’m flabbergasted and heartbroken for this family, and I speak on behalf of I think the entire community of parents who have children with chronic diseases and mitochondrial disease when I say that. We’re horrified, and it really makes me lose faith in the legal system. I already had lost faith, I think, in our hospitals and in our medical system. As you know, I have a child who has mitochondrial disease as well, and it’s an uphill battle. But to — I had a little bit of faith left that the legal system would realize that if the child had been in the hospital for 10 months and they couldn’t make her better while she was away from her parents, then maybe that original diagnosis should be reviewed again. And this little girl should be home with her family.
GLENN: Okay. Hang on just a second.
BALCELLS: Instead they told them, they said, come back next week. We’ll talk about it some more.
GLENN: Okay. So it’s not that they haven’t made her better in 10 months. It is that she has actually gotten worse in 10 months, correct?
BALCELLS: She has gotten worse, and that’s probably one of the saddest parts of this story as well. So the family is terrified. They’re under such a strict gag order that the family is so afraid to open their mouth even to ask for support from the people who are reaching out to them to help because they think that if they even say one word saying how they feel that that is going to be used against them as a reason to prove that they’re negligent and that they won’t get their daughter back.
GLENN: This is criminal.
BALCELLS: That’s the first thing. The gag order is flabbergasting to me.
GLENN: This is absolutely criminal. I mean, if there was anybody in public office in the Northeast that I trusted, I would get them on the phone. But this is — this is crazy. How can a parent have a gag order and be told not to say anything? That’s their — it’s their child, for the love of Pete. How can –
BALCELLS: It’s their child. Since when did you lose your right to even be able to reach out to the people who are there saying “How can I help you” and you’re supposed to say “I’m not allowed to talk about it. My child is not with me. It’s almost Christmas and I’m not allowed to talk about it.” I mean, the devastation on this family is just — can you imagine having your child taken away from you?
GLENN: I have to tell you –
BALCELLS: I almost think it’s worse than the child dying because this is like a Purgatory that goes on forever.
GLENN: I have to tell you if I were the family, when this whole thing is over, I hope to God that they get the biggest damn attorney they can possibly find and sue this children’s hospital until their eyes bleed. This is the — this — because this is not the only case of this. Tell me about the doctor who is vested in — or maybe — you may not know this. The doctor up at this hospital that is vested in this particular disease that they’re trying to say the parents have inflicted on this young girl. Do you know this part of the story?
BALCELLS: The doctor at Tufts.
GLENN: No, the doctor at — the doctor at Boston Children’s who is vested in — yeah, who’s vested in the — what is the name of the disease that children’s hospital is saying that she has?
BALCELLS: Somatoform disorder, psychiatric disease.
GLENN: Yeah, it’s a psychiatric disease. And this doctor who is at Boston Children’s, this is — you know, she wrote her paper on this, this is her disease. And she is — every single time this has happened in the past, she’s been involved and she’s — I think she’s trying to make a name for herself.
BALCELLS: Well, you know, it’s kind of one of those positions, if your job is to be the naysayer of those things, you have to prove your position’s worthwhile, right? You have to create work for yourself. I mean, we see that all the time. I really don’t feel like any one doctor, though, can truly be held responsible for this. I think that this is just a horrific example of a broken –
GLENN: System.
BALCELLS: No one paying attention to common sense here, including the judge.
GLENN: So –
BALCELLS: I don’t understand.
GLENN: Okay. So Cristy, what can people do?
BALCELLS: So here’s what we’re trying to do as an organization. We’re mounting an advocacy campaign asking for donations to try to help this family mount an even larger legal response. And you can look at that at mitoaction.org/advocacy. And, you know, I think that the social media aspect is helping. I think that the national awareness and pressure from the media is helping. The family does feel that they are in a corner and they don’t know what else to do. So we hope that by showing our support nationally, we can make a difference. We are talking now and have reached out to the legislature to try to emphasize how unjust this is and to ask for some transparency. I find it really appalling that in all of this time, no one has asked Boston Children’s Hospital to be transparent with their decision to really, to make a statement and that it is always like the parent being crucified while the hospitals, you know, stands at the top of the mountain. I find that, you know, unspeakable, especially when in this case we’re talking about taxpayers contributing their money to pay for this girl’s ten-month hospitalization. Her family is not after money. They don’t want a dime. They want their little girl to come back home. This child has no parents right now. She hasn’t even been put into custody of, like, a family member or an aunt and uncle or someone who could at least be acting like a mom or a dad for her. She has no parent. She lives in a hospital room. Alone.
GLENN: And she is — she is in a psych ward, is she not?
BALCELLS: She’s in a psych ward at the hospital. With a guard.
GLENN: This is one of the –
BALCELLS: It makes you disgusted, right? It makes you sick.
GLENN: Oh, yeah. This is — this is the kind of stuff that, you know, you read about in the 19 — you know, from the 1950s and Sixties where you read about what they used to do to people who were, you know, crazy and they would lock these people up in institutions, and you watch them and you just turn away from it in disgust and you think, oh, thank God we’re past that. No, we’re not past that. No, we’re not past that. That’s what’s happening right here. We have a young girl who is sick. Her parents are trying to do the best thing for her. The State has decided they disagree with the parents and the State wins. What this is saying to you, America, is you don’t have a right of your own child. That child does not belong to you. That child belongs to the State. They’re allowing you to take care of that child unless they disagree and then the State takes. And this is not like, “Well, we’re just going to say Jesus at her at the top of the hour and hope that she gets better.” That’s not what this is. This is a child that was diagnosed with one disease at Tufts University. She goes in for something else at Boston Children’s. They decide that that’s — “We don’t agree.” They don’t have a right to another opinion? They have to take Boston children’s Hospital opinion and so because the parents said to hell with that; we’re taking our child. The hospital goes to the court and takes custody of the child and puts her in a psych ward. Meanwhile she could walk into the hospital — now nine months later the girl can’t walk.
BALCELLS: Correct.
GLENN: Because she’s not about treated, she’s not being treated for what Tufts University said she –
BALCELLS: For what she has.
GLENN: It’s such an outrage. Listen, here’s what I would like you to do. If you are able to donate any money, I would like you to go to mitoaction.org, mitoaction.org/advocacy and make a donation and help this poor family. This is a regular run-of-the-mill family. This is a family that is already — they are trying to do the right thing for their kid. This is not a crazy family, none of that stuff. I want you to go to mitoaction.org/advocacy so these people can hire a really good attorney, so they can have somebody on their side that is really giving them a defense. Let’s see if we can get this child home for Christmas. This is the biggest outrage. Go there and see if you can help out. Cristy, thank you so much and we’ll talk to you again.


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