For those who don’t know me my name is Mieken (aka Miriam in my professional life) and Terri Van Wambeke has been my best friend for over thirty years.

As many of you know, our dear friend Terri has been fighting cancer for nearly a decade and a half. Through all that time Terri has battled as we would expect, but now she’s confronted by something science can’t address: her insurance company. She is currently getting long-term treatment at M.D. Anderson in Houston and with another doctor in Florida, with approximately $8,000 per month in out-of-pocket costs.

Now, all of Terri’s doctors say she needs a particular medication, but her insurer refuses to focus on the science instead of the bottom line. They are refusing to pay for the $60,000/month drug even though it should be covered under her plan. As the time pressure mounts to get started with what is the latest, best treatment, I am reaching out to ask for help in keeping Terri in the fight.

Following is a chronology of all that has happened over the course of the last 13 years for those who care to understand the science. And near the end there are more details on the extraordinary costs and burdens of engaging in a battle like the one Terri is in.

In 2008, along with a diagnosis of breast cancer, Terri was diagnosed with Li-Fraumeni Syndrome. Li-Fraumeni is a genetic disorder by which her body does not have the P-53 gene, the gene which tells your body to repair or destroy cells with damaged DNA, such as cancer cells, allowing cancer cells, to proliferate.. It is a hereditary disease which makes many "standard" cancer treatments unusable without causing additional damage, usually in the form of secondary, more aggressive cancer.

Following a double mastectomy within a week of her initial diagnosis, treatment with chemotherapy and Tamoxifen, Terri was believed to be in remission and, we hoped, cancer free. Unfortunately, that proved not the be the case. She was diagnosed with another very rare cancer shortly thereafter, called Malignant Histiocystoma. Then in June 2019, right before her ten year anniversary, Terri was diagnosed with Stage 4 Non-Small Cell Lung Cancer. This of course came as a shock as we all know Terri takes excellent care of her health, exercises regularly and never smoked a day in her life. Since that diagnosis, Terri has been treated with an EGFR targeted therapy and was stable. She continues to take the medication daily, with an alarm on her phone as she is required to take it the same time each day.

Terri has tried multiple treatment modalities, including having High Intensity Frequency Ultrasound at UCSF for the tumor in her pelvis. Being the responsible person she is, when Terri was able to get the Johnson & Johnson Covid vaccine in April 2021, she jumped on the opportunity to do her part to help control the pandemic. Unfortunately, shortly thereafter, Terri learned her cancer had spread. It is now throughout her pelvis and spine. While she continues to take her EGFR Targeted therapy (Osmertinib), her doctors (she has an extensive group of doctors from Oregon, UCSF and now MD Anderson in Houston where she is currently undergoing treatment), her medical team wants her to try a new targeted therapy combination of Amivantamab and Pfatanib.

As is common with insurance companies, they are denying the prescription as they (the insurance company) has decided that she should have cytotoxic therapy (chemo) instead. In that uneducated determination, they are ignoring the fact that chemo might at best only provide Terri a two month survival benefit; and worse, because of her previous chemo (during her 2008 breast cancer treatment) and Li-Fraumeni Syndrome, any additional chemo puts her at significant risk of developing Acute Myeloid Leukemia. Moreover, another "common" treatment is radiation, which is not a viable treatment option because with Li-Fraumeni, radiation therapy results in secondary cancers such as sarcoma within a short period after radiation treatment. She is currently under medical care at MD Anderson in Houston. One of the largest lesions in her spine was treated there with radiofrequency ablation.

At this time, Terri is out of traditional medical options if her insurance company does not approve the therapy. It has been four months and they haven't budged so it's not likely. The therapy costs approximately $60,000 per month. She is seeking assistance from the drug company directly. Even if the drug is covered by the drug company, she will still have out-of-pocket expenses of approximately $8,000 per month for costs associated with other treatments, travel and lodging in Texas and Florida.

We all know how incredibly intelligent Terri is. We also know she is a fighter. She won't take this lying down and this is where I am asking for your help. Please know that Terri is very private and getting her to allow me to share such details is hard for her. But we have no choice.

After extensive research, Terri has found an medical doctor in Florida, Dr. Daniel Thomas. He offers evidence based off-label drug therapy and he believes he can help Terri. The costs, however, are quite high. The treatment, while quite involved and more than I can include here, includes Methionase which costs $1,000 per month, multiple supplements of $400 per month, monthly labs of approximately $300 per month and once monthly treatment in Florida which costs $5,500 per month plus hotel and airfare. Other than few prescriptions which are covered, this is all out-of-pocket.

Terri has been on disability for years and hasn't been able to work. Her wonderful husband Michael has put aside his horse training business to take care of Terri and support her through this fight. He has been amazing and a constant source of tremendous comfort for Terri. However, the financial impact and cost of this treatment cannot be ignored. I implore each of you to do what you can to assist Terri get the treatment she needs. She has made the world

a better place for so many of us, and certainly for many of our pets and equine partners. I am hoping you can contribute whatever you can to allow Terri to keep up the fight and continue to make her brilliant contributions to the care of all of our animals and to continue to bless us with her friendship.

I will provide updates as they are available. Thank you so much for any contribution you can make. Terri, Michael and I greatly appreciate all of you.