DIPG/DIPT Discussion

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A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Tuesday, June 8, 2010

Compassionate Access Act Capital House Briefing

Abigail was 21 when she ran out of options for her cancer. Her oncologist urged the family to try to get access to an experimental drug targeted at EGFR called C225 (now called Erbitux). Contacting the pharmaceutical companies, congressional representatives, the media and other influential people was to no avail. Abigail died on June 9, 2001. Ten hours after the greatest tragedy in his life, Frank Burroughs, decided to dedicate his life to furthering the cause of expanded access. In November 2001, a foundation was started bearing his daughter’s name- Abigail’s Alliance for the Better Access to Developmental Drugs.

Now there is a House Bill (H.R. 4732) called The Compassionate Access Act of 2010 which seeks expanded access to drugs in development for patients with serious disease. A summary of the bill is at-

On Thursday June 10th there will be a Capital House Briefing on the Compassionate Access Act held in room 122 of the Cannon House Building. Abigail Alliance cofounder, Steven Walker, will be giving a Power Point presentation. Interested persons are invited to attend.

Those who can’t attend can still support this bill. Contact the Rep's office in DC. Ask for the health care aide. Request the aide to go to the Congressional Briefing on June 10 at 9 (122 House Cannon Building- Rep Diane Watson is sponsor and her office may know more details if they need) Ask for the Rep to consponsor the bill. To find your representative’s office

Wednesday, June 2, 2010

Journal Watch (continued)

“The lack of tumour tissue has led to stagnation in biological and genetic studies.”

The paper’s main focus was in understanding problems in overcoming the lack of specimens for analysis of DIPGs. The authors did identify that recent reports indicate “that biopsies in DIPG are safe and performed with acceptable low and only transient morbities while accomplishing meaningful analysis.” However, they also felt that using living tissue is ‘most defensible’ once there are therapeutic options in which the patient will benefit from in obtaining such samples.
The authors report on post-mortem tumor examination to try to get out of this catch 22 situation (one can only do a biopsy if there is benefit to the individual however one will not uncover those things that might be of benefit without tissue).
In regards to the 9 donations-
  • Eight of the children died at home.
  • Two children (age 10 and 11) expressed their own wish to donate.
  • No parent expressed regret in donation.
  • All families were offered disclosure of the autopsy result.
Although the numbers are very small, the paper is of significance in highlighting that such a program can be untaken— even with such logistical difficulties as serving an area of 1 million square kilometers with the children dying at home. Not only can such research happen but it can also uncover important biologic/genetic findings. For example, 2 of the 9 tumors were PNETs instead of gliomas.
It is interesting that the authors concluded with a statement indication for such a program to work there has to be cooperation of the primary neuro-ocnologists with the palliative care team, the pathology department and hospital management. This cooperation is critical in overcoming barriers and logistical issues.


J Neurooncol. 2010 May 16
Post mortem Examination in diffuse intrinsic pontine glioma: challenges and chances.
Angelini P, Hawkins, C, Laperriere N, Bouffet E, Bartels U.
Division of Paediatric Haematology and Oncology, The Hospital for Sick Children, Toronto, Canada