I cannot imagine how devastating it is to hear you have cancer. Now, imagine hearing these words about your child. I hope and pray that you have never experienced this, or you never do, but for a family on Long Island, this is a horrible reality. To make matters worse, the medication she needs to help put her in remission costs more than $570k a year – four times the average median income of Long Island. That is a staggering number for anyone to absorb, let alone for the parents of a child with a rare disease. Let’s take a look.
Neveah’s Story
Neveah is a 15-year-old girl with Acute myeloid leukemia (AML). AML is a fast‑growing cancer of the blood and bone marrow. It happens when immature blood‑forming cells in the bone marrow (called myeloid cells) become cancerous and multiply out of control instead of maturing into normal blood cells. AML affects the body in the following way:
Normally, bone marrow makes:
- Red blood cells (carry oxygen)
- White blood cells (fight infection)
- Platelets (help blood clot)
In AML:
- The marrow fills with abnormal, immature cells (“blasts”)
- These crowd out healthy cells
- This leads to:
- Anemia (fatigue, shortness of breath)
- Infections
- Easy bruising or bleeding
AML progresses quickly and usually needs to be treated right away.
Neveah’s Journey Since Diagnosis
Neveah’s journey has been extremely difficult since her original diagnosis of AML leukemia in February 2025. Since then, Neveah has endured multiple rounds of chemotherapy, as well as multiple donations of DLI (Donor Lymphocyte Infusion) of T-cells from her brother Christopher. This cancer is extremely aggressive and has persisted even after some promising results initially from treatment. It keeps coming back. Neveah’s doctor feels that a new drug, Ziftomenib, is the appropriate course of treatment for her at this time. Ziftomenib is a prescription anticancer medication used to treat a specific form of acute myeloid leukemia (AML) in adults. It is sold in the U.S. under the brand name Komzifti. Unfortunately, this drug has not yet been approved by the FDA for children.
FDA Approvals
FDA approval determines:
- Who the insurers are obligated to cover
- Whether coverage is routine vs. exceptional
- Eligibility for on‑label coverage pathways: This means that a patient meets all the conditions insurers expect for routine coverage of a drug because the drug is being used exactly as the FDA approved it.
Komzifti is FDA‑approved only for adults with relapsed/refractory AML with an NPM1 mutation. It is normal for approval for children to lag for years and/or decades. As a result, Neveah’s family must raise $48K/month for treatment. You read that right, forty-eight thousand dollars a month for this treatment. She has fiercely fought this disease, but the cancer is incredibly aggressive, and now a very significant financial hurdle stands before Neveah and her family.
With no other options, her family has started a GoFundMe for her medication. Please visit the site and donate if possible. Any amount is welcome. Please share this so others can see her story and contribute as well. You can access Neveah’s GoFundMe by clicking the link. Her family has a previous GoFundMe campaign from 2025 to help offset treatment costs. This current campaign is to fund the critical medication that Neveah needs for her treatment. I appreciate everyone’s help in contributing to or sharing the story of Neveah’s treatment.
The Catholic View
Jesus always put children at the center of his Kingdom. In the Gospels, He repeatedly centers children precisely because they’re vulnerable. Matthew 19:14 states:
“But Jesus said, ‘Let the children come to me, and do not prevent them; for the kingdom of heaven belongs to such as these.”
Multiple analyses show that pediatric cancer drugs have trailed adult approvals by years or decades. A comprehensive FDA review found that, over more than 65 years, only a small fraction of oncology drugs received pediatric‑specific approval, even when similar biology existed in children. Is this a case of drug companies simply catering to their markets? Why wouldn’t drug companies target approvals for children as part of the FDA adult process, or immediately after? In Neveah’s situation, her family was handed a horrific bill for the chance to heal their daughter. That in and of itself is unconscionable and completely unacceptable.
The fact that FDA approvals can lag for years, and possibly longer, raises the question of whether drug companies are driven by need or return on investment (ROI). It’s understandable that, when confronting a system where a child’s access to life‑saving treatment hinges on regulatory labels, coverage pathways, and financial barriers, that contrast feels stark. Modern healthcare systems are built around evidence standards, actuarial risk, and administrative rules—not moral vision. Those structures can save many lives, but they can also feel painfully misaligned with the instinct that children should be protected most, not least. Are they driven by need or ROI? The answer is likely a combination of the two, but frankly, history shows us the bottom line has incredible power.
Ziftomenib’s Corporate Ownership
Ziftomenib is not owned outright by a single company. It is co‑developed and co‑commercialized under a formal collaboration between two companies, with ownership and commercial rights split by geography.
1. Kura Oncology, Inc. (United States) @KuraOncology
- Original discoverer and developer of ziftomenib
- Holds the U.S. FDA approval
- Leads development, manufacturing, and commercialization in the U.S.
- Shares U.S. profits 50/50 with Kyowa Kirin
2. Kyowa Kirin Co., Ltd. (Japan‑based global pharma) @KyowaKirin
- Strategic global partner
- Holds exclusive commercialization rights outside the United States
- Leads regulatory filings, marketing, and sales in:
- Japan
- Europe
- Asia‑Pacific
- Rest of the world
- Pays Kura:
- Large upfront fees
- Development and approval milestones
- Ongoing royalties on ex‑U.S. sales
Fiscal Year 2025 Financials (Ended December 31, 2025)
- Revenue:$67.5 million
- Includes early Komzifti launch revenue plus collaboration revenue
- Net income: –$278.7 million (net loss)
- Cash & investments: $667.2 million at year‑end
The Financial Interpretation:
Kura remains deeply unprofitable, but it is well‑capitalized and transitioning from development to early commercialization. Komzifti sales were beginning in late 2025, so expenses still far outweighed revenue.
- Revenue:¥496.8 billion (~$497B USD)
- Net income attributable to owners:¥ 67.0 billion
- Year‑over‑year: Net income up ~12%
This appears to be a great opportunity for both companies to find the money to treat this child with potentially life-saving medicine. I call on the owners to review this situation and work together to help this young lady defeat her cancer.
Please share your thoughts about this article in the “Comments” section.
Peace
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