Combatting DIPG

-- By DanielAdewunmi - 16 Feb 2023

What is DIPG

Diffuse Intrinsic Pontine Glioma, DIPG, is a tumor of the brainstem. It affects the most vital functions of human living including breathing, blood pressure and heart rate. It is almost entirely a pediatric illness affecting about 300 children per year in the United States. As of now, DIPG prognoses are incredibly poor, as the current five-year survival rate for a child diagnosed with DIPG is only two percent.

My Personal Experience

My experience with DIPG began in May 2021. I had recently been admitted into Columbia Law School and was preparing to graduate from the University of Florida. A few weeks prior to graduation, my younger sister Abigail began to complain about severe headaches and double vision. There were a few urgent care and emergency room visits but no cause was identified. However, at the point my sister attended my graduation ceremony with the rest of my family, it became clear that there was a significant problem. Her double vision and headaches had been paired with facial drooping and loss of balance.

Following my graduation, on May 4, 2021 my sister had an MRI performed. Only a few hours later, I received a phone call from my mother asking me to make the two-hour drive home as a tumor had been found on the MRI. 24 hours later, my family was informed that my sister was now a DIPG patient, a diagnosis that would likely lead to the loss of her life.

Treatment

As the doctors informed us about my sister's new diagnosis, they let us know the current standard of care regarding DIPG. There was no encouraging news as they stated that there are no cures for DIPG and treatment is largely focused on improved quality of life. Due to the tumor's unique location on the brainstem, surgical operation is impossible because the brainstem is so crucial to human function. Additionally, chemotherapy and radiation have only been found to decrease the severity of symptoms for up to a few months before the tumor resumes its aggressive progression. As a result, they recommended that we return to the University of Florida and participate in a clinical trial, in hopes that developing treatment could produce beneficial results. It was at this point that I decided to defer my admission to Columbia Law School. It was clear to me that this illness posed a grave threat to my sister's life and that my family needed me to support them as she underwent treatment.

Clinical Trial

At the University of Florida, we were introduced to a clinical trial utilizing immunotherapy. The aim of the trial was to essentially train my sister's immune system to combat and destroy the tumor on its own through the development and administration of "vaccines" created from a biopsy of her tumor and collection of her T-cells. Prior to the administration of these shots, the trial had my sister undergo chemotherapy and radiation treatment in an effort to prevent the tumor's advancement long enough for the adequate development of the vaccines.

My sister's symptoms would improve throughout the course of the summer but the tumor ultimately progressed beginning in late Fall 2021. The positive effects of radiation and chemotherapy were wearing off as their lack of permanence became apparent. Additionally, the vaccine administrations under study in the clinical trail were not having the desired effect of inspiring her immune system to destroy the tumor to an adequate degree. Unfortunately, the tumor's development would continue until my sister's passing on January 12, 2022.

Abby's Corner

Following my sister's passing, my family and I co-founded Abby's Corner. Abby's Corner is a 501(c)(3) organization with the aim of combatting DIPG through the raising of funds and contribution to medical research. In November 2022, we joined the DIPG/DMG Collaborative, a membership of DIPG organizations pooling resources to give greater contributions to medical research and clinical trials.

Obstacles

An unexpected obstacle that we have encountered since founding Abby's Corner concerns the intersection of medicine, law, and policy. DIPG is a pediatric illness, whose patients tend to be on the younger end. Current regulations require testing of new treatments to take place on adult populations before they can be expanded to pediatrics. This is in place to ensure the protection of our children from potentially harmful or untested treatments. However, as DIPG does not have a substantial adult population on which clinical trials can take place, potential treatments are being withheld from DIPG patients as they cannot be tested on the required adult population. As a result, treatments that have proven effective for unrelated cancers are being translated into the DIPG space for testing rather than allowing for the development of treatments curated specifically for DIPG.

Furthermore, the rarity of DIPG poses a significant obstacle to further development of treatment. Because current regulations require a showing of efficacy at a large scale prior to its approval generally, the patient population is simply too small to produce the mandated results. Especially when this issue is viewed in combination with the adult versus pediatric issue exacerbated by current policy.

As a result, there is currently a Congressional proposal that has been tabled entitled the Promising Pathway Act. This act is intended to combat the very issues expounded upon in this narrative to increase the feasibility of clinical testing. However, political maneuvers have resulted in the act being tabled off, potentially dead in the water. This intersection of current legal standards, policy, and medical research have created an obstacle in combatting an illness that has touched myself and my family directly. It is an obstacle that I hope to see overcome, one that I eagerly seek guidance regarding manners in which to approach the issue, as I find myself in an environment in which instructors and mentors may have valuable insights.

I'm so sorry, Daniel. I lost my father to gliobastoma, and so we have shared some of life's most disturbing experiences.

As you may have seen among the research docs, the loss of a sibling is a surprisingly frequent motivator in setting people on the lifetime path of research against the disease that caused the death. This draft suggests that you might be inclined by your own tragic experience to develop your practice along lines that intersect in the funding and regulatory approval of pediatric oncology R&D. In that case, the route to improvement is to bring the draft from the past into the future, from showing how you came by the mission to describing how you plan to educate yourself to perform it.

The first step is to outline what you need to learn, the catalog of questions that represent what you don't know about your future practice. The next is to define the network you need to build, that is, the people you need to meet. Along the way, compiling those questions involves discovering sources, reading about both what and who. That means building your own learning infrastructure, from bibliography to Rolodex. Your next draft should be about how you intend to do that.

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