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Advocacy

ad·vo·ca·cy: The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support.


 

 

 

 

 

Justina Pelletier goes home!

 MitoAction's statement

After a 16-month ordeal, Justina Pelletier is finally going home.  On behalf of everyone at MitoAction and the mitochondrial disease community we represent, we hope that Justina’s transition back to her family is smooth and that she will gain strength in the comfort of her own home. Mitochondrial disease is a complex disorder caused by a cellular defect which impairs the body's ability to generate energy necessary for proper organ function. 

This case not only has taken its toll on the Pelletier family but also has had a significant impact on the mitochondrial disease and rare disease community.  Our community’s faith in the medical and legal systems has been shaken to the core. Families are afraid to seek emergency medical care for their children for fear of having them taken away.  Parents are being questioned more than ever about their children’s diagnoses and treatment plans.  The accusation of medical child abuse is being used liberally based on individual interpretations of a child’s diagnosis, a family’s actions, and the history of medical treatment and intervention.  As a result, parents are being held accountable for every decision in their child’s care, even when there is lack of consensus between healthcare providers.

The Pelletier situation also has exposed rifts within the medical community over the scope of mitochondrial disease, polarizing physicians between those who restrict mitochondrial disease to a small subset of genetic or other well-described disorders and those who treat symptomatic patients clinically even if a faulty gene cannot be found.  Allowing such disagreements to enter into the hospital acute care setting represents a huge step backwards for patients and families, many of whom already have undergone a diagnostic odyssey with their doctors.  If only one change were to come from the Pelletier family’s ordeal, recognition of the value of the patient and family as part of an integrated care model due to the nature of the disorder would be a significant process improvement.  

MitoAction is addressing these concerns through its recently created Advocacy Task Force and medical education outreach initiatives, which seek to prevent and defend against unwarranted accusations of medical child abuse, and to improve fundamental understanding of day-to-day patient care approaches amongst healthcare providers.  By initiating a community response to the Pelletier case, MitoAction hopes to spark a nationwide dialogue on alleged overmedicalization and proactively improve the circumstances for mitochondrial disease families going forward. 

Will you help MitoAction provide legal advocacy to these families in need? Help us to be strong as the voice of the Mito community.

Have you feared having your child with Mito taken from you due to clinical disagreement, institutional policy, and a gross lack of knowledge about mitochondrial disease? While this is an extreme case, it is certainly -- and sadly -- NOT a new situation.

Sometimes the diagnosis of mitochondrial disease and its symptoms are hard to understand. Sometimes there is a lot of confusion, especially when symptoms come and go without rhyme or reason. Sometimes (all the time) parents are stressed, families are overextended, and moms and dads are expected to advocate on multiple levels.

MitoAction’s family-centered resources provide the safety net and support so critical to patients, their families, and the community supporting them. MitoAction’s mission is to reach both the families who are suffering and to improve patient care by educating physicians and supporting new treatments for the disease.

“This situation is an example of something that has happened frequently in a horrifying amount of numbers in past five years,” Cristy said in the article, “Hospital Holding Teen Against Parents’ Will Accused of Having a History of Doing it Before.” “More children are being diagnosed with mitochondrial disease. There’s a lack of understanding about the disease and it becomes a situation especially in academic hospitals … with many people involved in the decision making process. The erratic nature of symptoms causes a great deal of confusion among hospitals.”

Will you help MitoAction provide legal advocacy to these families in need? Help us to be strong as the voice of the Mito community.

Timeline

JUNE 17, 2014: Cristy Baclcells appears on Chronicle.

Justina's Story: A Fateful Day in February

Justina's Story: What is Mitochondrial Disease?

Justina's Story: Another Family's Fight

Justina's Story: Going Home

MARCH 26, 2014: Cristy Balcells appears on the Michael Graham Radio Show,
Reaction To Ruling In "Free Justina" Case.  Download The Audio Here (4.51 MB).

MARCH 26, 2104: Christine Cox appears on the Michael Graham Radio
Show, Reaction To Ruling In "Free Justina" Case.  Download The Audio Here (3.22 MB)

MARCH 20, 2014: MitoAction's letter to Judge Johnston

FEB. 25, 2014: Cristy talks on the Kuhner Report on WRKO.

FEB. 24, 2014: MitoAction Executive Director Cristy Balcells on the Michael Graham Radio Show: "Free Justina" Case Comes to a Boston Courtroom

FEB. 24, 2014: Board member Gordon Russell on WCVB report: Battle over Medical Care for Ailing Teen Takes Major Turn

FEB. 24, 2014: MitoAction's statement after judge ruled Justina Pelletier would be sent to foster care.

FEB. 23, 2014: On Huffington Post, Cristy writes "First, Do No Harm: How We Failed Justina Pelletier and Her Family

JAN 13, 2014: Gordon Russell on the Petra Destinee Program, "Justina Pelletier:  Mitochondrial Disease Does Exist

JAN. 10, 2014: Cristy featured on WBUR: Teen in State Custody after Boston Hospital Accuses Parents of Medical Child Abuse

JAN. 7, 2014: Cristy writes an op-ed piece for the Boston Globe called "Understanding mito." (Click here for a pdf version.)

DEC. 15, 2013: MitoAction's Leadership Creed for Mitochondrial Disease

DEC. 4, 2013: Read Cristy's essay: A Broken System Lets the Chronically Ill Slip Through the Medical Maze Cracks

NOV. 26, 2013: Update on FoxCT: Girl Held at Boston Children's Hospital, Parents Fight for Custody

NOV 25, 2013: Hospital Holding Teen Against Parents' Will Accused of Having a History of Doing it Before 

NOV. 25, 2013: Cristy appeared on the Glenn Beck Show to impart her knowledge and be the voice for mitochondrial disease patients.

 


More than ever before, families of children with mitochondrial disease are being questioned or accused of "making up the diagnosis" or  "overmedicalizing the child's care." Over the past 12 months, MitoAction has extensively interviewed a number of families across the country who have faced this horrifying plight. In the majority of cases, the parents have exhausted their life savings, mortgaged their homes, hired advocates and lawyers, and fought the system they trusted to gain back their rights as a parent. During this period of time, we heard from parents that they watched helplessly from afar while their child’s health declined even further, despite the intention by the hospital or child protective services to “prove” that the parents were responsible for the child’s complex medical issues.

Mitochondrial disease is characterized by a conglomeration of symptoms that affect multiple organ systems and which present in an erratic fashion. It makes the disease difficult to describe, difficult to diagnose, and difficult to treat. However, it does not make it appropriate to traumatize a child and a family because it is misunderstood and because precise diagnosis is not always possible.

MitoAction’s goal is to make an impact on this terrifying trend by educating primary healthcare providers, non-Mito specialists, and medical residents about the complexity of mitochondrial disease. We also intend to design a retrospective study to examine the similarities in symptoms and circumstances among these patients and publish an academic paper with our findings in an effort to demonstrate the threat of death and decline when these children are removed from their family and treated inappropriately – all due to misperceptions and ignorance about mitochondrial disease.

Our vision is to dramatically improve awareness of mitochondrial disease as well as empower affected individuals and families.

You can help us by coming forward if you or your family has been involved in a case like this. If you have been accused of medical child abuse, Munchausen by proxy, somatization disorder, or fabrication of symptoms related to misinterpretation of a child's symptoms, let us know. We respect your right to privacy and will keep your information confidential. Your feedback can help us determine ways we can help to both assist families and to educate the medical community. Please contact us via email at info@mitoaction.org.

Munchausen by Proxy Accusations in Children with Mitochondrial Disease: 

Dr. Alex Flores from Tufts Floating Hospital for Children presented Munchausen by Proxy Accusations in Children with Mitochondrial Disease in 2009 in response to the increasing number of accusations of child abuse and Munchausen by proxy that have been placed upon many parents of children struggling from the devastating symptoms of mitochondrial disease. Listen to the podcast here: http://www.mitoaction.org/podcasts/munchausens-proxy-accusations-children-mitochondrial-disease

Advocating Responsibly and Communicating Effectively: 

Mannie Taimuty-Loomis, BS OD, MAHED and Executive Director of the Jonah & The Whale Foundation, Inc. presented this topic in 2012. During a time when families with children with mitochondrial disease may face accusations of medical child abuse or Munchausen’s by proxy, it is incredibly important to advocate responsibly and communicate effectively. To listen to the podcast: http://www.mitoaction.org/podcasts/advocating-responsibly-and-communicating-effectively

Other helpful links: 

Becoming a Great Advocate: Advice for Parents & Adult Patients with Complex Needs

Coordinating Care for Mito Patients: An impossible dream?

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