MissionGBM FAQs - Part 2
Because you have lots of questions
The response to MissionGBM FAQs – Part 1 was vigorous and delivered a clear message: “More (cowbell), please!”
Never one to disappoint a loyal and engaged readership, and in need of something to do to occupy the time as we and the brain cancer community nervously pace the floor awaiting the 30-Apr PDUFA date for tovorafenib for pediatric LGG (Day One Biopharmaceuticals; see here, here and here), we offer “More!”. Cowbell sold separately.
Can MissionGBM Offer Tips on How to Identify a Good Neuro-Oncologist?
For most patients, treatment will be rendered by a Board certified NO affiliated with a Brain Tumor Center, and randomly assigned to the patient. The NOs are intelligent, well-meaning physicians, but many have not seen anything but poor outcomes in their careers due to the challenging nature of brain cancers. Unfortunately, this tends to translate into an environment of “warehousing” patients on SoC, particularly at the biggest brand name Centers (Pro Tip: Whether it is brain cancer or other non-brain cancers, any institution with the words “Cancer Center” in its formal name is generally organized as a factory with long wait times, unsatisfactory patient communication and an obvious emphasis on revenue generation from both clinical practice and the conduct of clinical trials). In addition, our data indicates that many of the older NOs are not facile with the tools of modern molecular oncology (immuno-oncology did not even exist until roughly 10-15 years ago), which can manifest as a lack of consideration of such tools when designing personalized treatment regimens. Every week, we speak with NOs who have large clinical case loads, but do not read the literature or engage in any laboratory research. Nonetheless, they are aggressive recruiters for their trials even though they often cannot explain to us the scientific basis for the trials. It is impossible to engage in evidence-based treatment design if one is unfamiliar with the evidence.
We would highly recommend a different approach, which emphasizes the patient and caregiver as customers who are making one of the most important purchase decisions of their lives. Would you buy a house, car or investment simply because it was randomly assigned to you by someone you just met? Of course not! Take some time. Interview more than one prospective NO before making your purchase decision. Gather and critically analyze available information, particularly as it relates to evidence and #Data. Ask probing questions. Assess whether the NO is likely going to be communicative with you and respect you.
As we remarked in a previous post regarding Julie’s primary NO Dr. Iyad Alnahhas, we believe that the single most important question to ask when interviewing a prospective NO is:
“Are you willing to be open-minded and work with a global team to consider evidence-based treatment protocols apart from Standard of Care?” If the answer is not “Yes” without hesitation, then we advise that you continue interviewing other NO candidates.
As you might imagine, Dr. Alnahhas answered “Yes” to our question, even though he had just met us. Two and one-half years later, he still engages us regularly and always comes prepared to discuss treatment options for Julie. This is the kind of care relationship that gets results.
The #1 reason cited by new families requesting help from MissionGBM is dissatisfaction with a NO randomly assigned to their case, who displays little interest or awareness in designing or considering treatment protocols apart from SoC. Here are some direct quotes conveyed to us by MissionGBM families:
“He said, ‘We’ll just go with SoC even though [patient’s name] is uMGMT, and then try to come up with something when we observe recurrence’.”
“She said, ‘Nothing really works in GBM, so you can try if you want, but I’m not optimistic’.”
“On the first post-surgical visit, the doctor was accompanied by a Clinical Trial Coordinator. Within minutes and before the care plan was even discussed, the NO and Coordinator were pitching us about enrollment in a clinical trial conveniently open at their institution. We began to ask questions, but were largely dismissed with words to the effect of ‘Trust us. The scientific background is complex and difficult to understand for the average person’.”
And our personal favorite, which just occurred in the past week: “Doctor, you keep saying ‘I believe’ without showing us any evidence or data. Are we in church? In God we trust, but everyone else must have data”. [Note: Wow! Somebody actually does read my posts. ;-)]
You simply cannot make this stuff up! We heard it from NOs other than Dr. Alnahhas as we were putting together Julie’s care plan, and it made our heads explode.
We can and must do better! Because our 30+ years of Biopharma experience and the associated worldwide networks that accompany such professional activity gave us a rare advantage, we were able to quickly assemble Team Julie and achieve Results That Matter. Once up and running, why not attempt to share our findings with the rest of the brain cancer community?
The primary driver behind the launch of MissionGBM 18 months ago was the inexorable desire to fundamentally make things better for all brain cancer patients. Our Motto: “N-of-1 on Behalf of All” is the foundation underpinning everything we do at MissionGBM (credit to Peter Kolchinsky, Managing Partner of RA Capital Management for suggesting the Motto during our many discussions).
Are There Certain Brain Tumor Centers That MissionGBM Recommends or Avoids?
We get asked this question every single day, usually because one of our MissionGBM families is experiencing poor quality care, an incommunicative NO, or pressure to enroll in a questionable clinical trial. Sorry, but MissionGBM is never going to publish a ranked list of Brain Tumor Center even though we maintain one. We are a small community in brain cancer and the last thing that anyone needs is a civil war. Having said that, we do assist patients with identifying and establishing a care team relationship at Centers that are well-suited to manage their case on the basis of evidence-based protocols. We strive to find a Center and NO that are not too inconvenient for the patient and caregiver in terms of travel, but the priority is always to get the best care for the patient. In the US, there are certain Neuro-Oncology Deserts in which few NOs exist despite large populations. For example, the Denver area has a significant mismatch between the supply of NOs and the demand from a large and growing population.
One piece of advice that we would like to emphasize: Our data indicates that many patients initially “Buy the Brand” associated with large Brain Tumor Centers often affiliated with prestigious coastal academic medical centers (or other large metro areas like Houston, Chicago, and Phoenix). We STRONGLY advise patients to interview multiple NOs at several Centers before committing to a primary NO relationship (see the above advice about selecting a NO). Just like everything else in life, the quality of the result is highly dependent on the individual NO instead of the brand of the Center. There are certain Centers where one is more likely to enjoy an ACC basketball game than to receive quality, patient-focused care from NOs who are open-minded and can think beyond SoC.
Arrrgh, My Health Insurance Plan is so Frustrating! Can MissionGBM Offer Any Tips?
Dear Reader: We know your pain. We, too, have spreadsheets that track our EOBs that sometimes even match up to the information shown on our Plan’s web portal. Let’s see if we can break things down a bit, and thereby, offer some tips. Here are the key points:
Brain cancer care is complex and expensive, thus you cannot expect simple solutions.
In the US, about 50-55% of all people are covered under Employer-Sponsored Healthcare Plans (ESHP) in any given year. Medicare covers about 19% of people, and the remainder are covered under other private health plans or are uninsured (see here and here).
While your ESHP may provide a card displaying the name and logo of a brand name health insurance company, it is often the case that the company does not actually function as anything other than a claims processor for the underlying employer self-insured plan. Employers can and do make specific coverage decisions which diverge from the published Medical Policy Coverage Statements (MPCS) posted on the claims processor’s web portal. Note: We got caught up in such a frustrating tangle with Julie’s plan early in her treatment Journey. The published MPCS on the web portal indicated that one element of her treatment was covered, but the claims were repeatedly denied…and nobody would tell us why. After building a relationship with a Nurse Navigator and Medical Director who valued our expertise regarding Neuro-Oncology, we were finally told off-the-record that Julie’s employer-sponsored plan specifically excluded coverage of the medical device despite the published MPCS indicating coverage on the web portal of the insurance company that was processing the claims for the employer’s plan! By design, transparency is not a core competency of the siloed, rent-seeking US health insurance system.
As a result, we HIGHLY recommend that you do not simply rely on what you see published on the web portal of the brand name claims processor affiliated with your employer’s plan. Call both the provider’s office and the health plan hotline to verify that a particular drug or device under consideration is covered by your plan.
If your health plan will not cover the treatment, which is usually the case for off-label drugs and devices in brain cancer, then work with your NO to submit a Patient Assistance Program (PAP) application to the manufacturer of the needed therapeutic agent. Most companies have a PAP, and the staff tends to be very patient-focused and helpful. You may have a co-pay under the PAP, but the total cost is usually income-based and is far less than the full cash pay price for the agent. We will not publish a list of all the PAPs on MissionGBM because they are dynamic, their policies can change frequently and we are not in the business of tracking each individual PAP and insurance plan.
We Have to Travel More Than an Hour Each Way for Infusion Treatments at Our Brain Tumor Center. Is There Any Way That We Can Move the Routine Infusions to a Facility Closer to Our House?
This is a question that we get weekly, and it describes Julie’s case as well. Let’s work through it and point out the trip wires that can cause the whole thing to blow up on you.
Individual plans have specific requirements regarding the sourcing of infusible drugs. A fair number of plans mandate that the infusible drugs can only be ordered and shipped from a plan-affiliated Specialty Pharmacy. This means that you, Dear Patient, must coordinate and schedule ordering and shipment of the required drug with enough lead time to get the drug delivered to your Infusion Center for the scheduled infusion. Do NOT make the assumption (mistake!) that your NO’s office will understand the intricacies of your Specialty Pharmacy benefit, and thus be able to seamlessly handle the drug ordering for you. You are STRONGLY advised to figure out the exact procedure for ordering infusible drugs from your plan’s Specialty Pharmacy, and then coordinate with your NO’s office and the Infusion Center to ensure that drug is delivered in a timely fashion to coincide with your infusion schedule. There is usually a Financial Coordinator or Case Manager in the back office of the Infusion Center with whom you should seek to develop a strong relationship (Relationships Lead to Transactions). (S)he will understand what you are trying to do, and usually will provide direct contact details for her office to streamline the overall process of coordinating drug ordering.
The fun begins when the prescribing doctor for the infusible drug is located at one Center (usually the Brain Tumor Center), but you want to move the drug Rx and shipping destination to another Infusion Center closer to your house. Doing so is virtually guaranteed to cause the insurance plan and Specialty Pharmacy to “re-examine” your care plan and coverage, which often results in amendment or cancellation of your drug coverage even though it was established and running smoothly at the original Center [Exploding Head emoji]. Transfer of an infusible drug Rx can be done, but we advise that you carefully consider whether the hassle and potential for care interruption is acceptable, especially if you are on a manageable infusion schedule (e.g. Q3W, Q6W). Do NOT assume anything. Trust, but verify over-and-over until there is clear evidence that the drug has shipped to the new Center at least twice. Only then can you exhale.