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The Cost of NF


  • Unfortunate Financial Aspects of NF
    1. Doctors
    2. Medication
    3. Treatments
    4. Finding Cures for NF
  • Conclusion

Three forms of Neurofibromatosis (NF); NF Type 1 (NF1), NF Type 2 (NF2) and Schwannomatosis (SWN) are very different, but they all result in the growth of slow growing but still painful, dangerous, potentially life threatening tumors. There is no treatment to permanently; stop, shrink and prevent more NF tumors from growing, but all NF tumors do not require treatment.

Management of health for individuals with NF includes regular Neuro-Oncologist visits, MRIs to monitor the tumor growth and issues and surgery to remove of one tumor at a time. The constant need to see doctors, purchase medications, have different medical test and treatments are a financial burden that results in issues that increases the risk of the dangerous, life threatening health issues, when not lowering the quality of life due to financial limitations.

Read more to understand; the unfortunate aspects of NF, why a cure for each NF type is needed and why it is to the advantage of many other than people with NF to find a cure.

Unfortunate Financial Aspects of NF

The unfortunate aspects of NF are when individuals have painful, life altering, when not life threatening tumors and cannot get the best treatment available. Inability to get the best available treatment is the result of a few factors:

  1. Doctors: As NF1, NF2 and SWN specialists cannot be found in every hospital, and therefore cost more, individuals are often unable to get approval to see a doctor that understands the form of NF an individual has, as a doctor who has knowledge of treatments necessary for other reasons for tumor issues or understands;
    • NF1, which would not help a person with NF2 or SWN
    • NF2, which would not help a person with NF1 or SWN
    • SWN, which would not help a person with NF1 or NF2
  2. Medication: Tumor growth can cause pain, seizures strokes and a variety of other issues that can only be managed after the fact by daily use of prescriptions and other over the counter options includes things no insurance can cover 100% of the cost for.
  3. Treatments: Surgeries have a heavy cost and even insurance companies fairly have a l imit of how much they can cover a year, which either means an individual might need to pay thousands out of pocket or doctors knowing the limit of each insurance company will recommend different treatments even if the alternative has a risk of poor long term side effects.
  4. Finding Cures for NF: Research is underway for NF to understand the exact reasons for the different tumor growth for the each NF type, so far some Chemotherapy, Molecular - Target Tumor Treatments are in Clinical Trials.

    The issues with these is that; 1) so far there has only been some development for NF1 and NF2 Target Tumor Treatments, 2) none of these to date works for each person for the tumor type being targeted, 3) NF1, NF2 and SWN each results in the growth of more than one type of tumor, so at best these current options would only delay the growth of some tumors, 4) since these are only at the Clinical Trial stages few with NF1 and NF2 can get them, 5) with the current Clinical Trials since they do not destroy tumors but only reduce size or slow growth in some people, which many people with NF are content to have since some of these Clinical Trials can delay some of the life altering tumors or allow them to live longer, none currently available will ever be approved by the FDA.


The ultimate treatment is needed. Treatment to stop the damage each form of NF does in tumor growth and other issues that can result from NF not included needs to be found. Research is expensive, but enough research so far has concluded that treatments to stop each NF type would also help with other conditions as well, in addition to allowing people with NF to live healthier lives without putting pressure on insurance and families for constant need for treatments.

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