Sign and Circulate Jamie Heywood’s Declaration of Health Data Rights Petition Today

Wired Magazine is running a great article about Jamie Heywood, co-founder of PatientsLikeMe, and his quest to make personal medical records electronic and easily accessible online.

Heywood is behind HealthDataRights.org, a movement to declare our individual right to have and share our health data. Heywood has started the Declaration of Health Data Rights petition and supporters can publicly endorse it by going to HealthDataRights .org. Essentially by having access to all the health data about ourselves in a timely (key word!!) manner we can make better health decisions and save lives.

I am one person who would happily share all of our medical records like Heywood proposes.  I have been looking into a way to try and opt-out of the Hippa law Privacy Rule requirements.  I am not interested in keeping our medical records private. In fact, I want people all over the world to access our medical records in the hopes that someone can help save the lives of our twin daughters who suffer from a fatal cholesterol disease.  In some cases my doctor’s can’t talk to each other unless I give written permission.

I am asking everyone I know to endorse the Health Data Rights petition today. Our family has literally spend hours collecting Addi and Cassi’s medical records from hospitals including Lucille Packard Children’s Hospital at Stanford, Mayo Clinic, Children’s Hospital Michigan, Children’s Hospital Oakland, National Institutes of Health and Renown Children’s Hospital.

You can see the picture of the 3 inch binders I have created that contain the most important medical information on Addi and Cassi (we have two each so far). The orginal stack of paper was two feet tall!  To get all of our data to doctors at various hospitals throughout the country, I have sent hard copies of the binders to them. If they requested the records themselves, they would have to sift through the two foot stack.  Do the top doctors in the world have time to do this?

Currently, we are six months behind in gathering all of the new records – it’s a constant battle as we try and keep up and request the records for two sick kids.  There is no reason why medical records could not be in electronic form and available to anyone at a click of a button to share and easily SEARCH.

At one point, we were going to scan all of Addi and Cassi’s medical records and put them online allowing any doctor or researcher in the world to access them.  We figured out quickly that it’s simply too time consuming to tackle and manage. When you’re trying to save your kids lives you don’t have time to send Hippa release forms to hospitals and weed through fax cover sheets and garbage that hospitals often send by mail. If someone is chronically sick and dying, trying to collect all personal medical records is virtually impossible.

As a society, we are living in fear of the health and life insurance companies and the issues surrounding pre-existing conditions. We need additional legislation with health and life insurance companies to make sharing electronic medical records a reality. We would probably save billions of dollars in productivity time as well.

FDA Investigational New Drug Application Documents for Cyclodextrin Treatment for Niemann Pick Type C Disease

Here you will find detailed documents outlining Addi and Cassi’s cyclodextrin infusion treatments. We filed a compassionate use IND application to the US FDA in early 2009 to give intravenous cyclodextrin treatment which was approved.  In September 2010, FDA approved a new request to put HPBCD directly into the brains of the twins.  Addi and Cassi’s treatment is currently being managed by Dr. Caroline Hastings and Children’s Hospital Oakland and is also monitored by the FDA.

Addi and Cassi’s Intratehcal Cyclodextrin FDA Filings

FDA Filing Requesting To Put Cyclodextrin Into The Brains of the Addi and Cassi – August 2010

Addi and Cassi’s Cyclodextrin Infusion Treatments Submitted to FDA – First Protocol Extension

Dr. Caroline Hastings Submission Letter to FDA – May 2009
Cyclodextrin Protocol Extension Letter To Dr. Ruyi He, Acting Director of FDA
Addi and Cassi Hempel FDA Cyclodextrin IND Extension
Cyclodextrin Specimen Collection Document
Addi and Cassi Hempel BioSampling Protocol

Addi and Cassi’s Compassionate Use IND Documents Submitted To FDA For Cyclodextrin Treatment

FDA Submission Documents for Addi and Cassi’s Cyclodextrin Treatment
Ruyi He FDA response letter to clinical hold – 1-17-09
FDA Type A Meeting Request Letter from Dr. Hastings
FDA Letter Releasing Clinical Hold on Cyclodextrin Treatment For Addi and Cassi Hempel
Hydroxy Propel Beta Cyclodextrin (HPBCD) Summary/Overview
Cyclodextrin Safety Study in Rats and Dogs
PNAS paper by UT Southwestern researchers on cyclodextrin

University of Notre Dame Airs Video During Football Game Highlighting Rare Cholesterol Disease

Thanks to the University of Notre Dame for highlighting the Parseghian Family’s fight against Niemann Pick Type C disease during the Notre Dame versus University of Nevada Reno football game.   They have a true commitment to helping fight not only Niemann Pick Type C but rare disease of all types.

A number of people in the Reno area who are big football fans and who are supporting our upcoming fundraising event for Addi and Cassi brought the video to our attention.  Thanks to the Parseghian Family for continuing to put themselves out in the public eye and for fighting for our all kids with this horrible cholesterol disease that causes dementia in children.

For those people who have never heard of Niemann Pick Type C (NPC), it is a rare disease that causes degeneration of many parts of the nervous system, and involves the storage of cholesterol and other fatty molecules throughout the body. Understanding what is going wrong in cells in NPC and how cholesterol is involved may well lead to treatments not only for NPC patients, but for other suffering from more common neurologic disorders like Epilepsy, Dystonia, Ataxia and Alzheimer’s disease.