amazing how you can strive to embrace non-judgment, awareness, and simplicity, yet develop quite the saga in just six months…

despite being approved to proceed with the hematopoietic stem cell transplant (HSCT) on December 1, 2016, I have been anticipating the insurer holding true ever since. one week after approval was offered, the insurer decided not to cover the HSCT. they found out the clinical trial was no longer actively enrolling patients, so they deemed the procedure to be “experimental and investigational” (dec. 8. 16)

interesting, that the National institute of Health defines a clinical trial as, “a research study in which one or more human subjects are prospectively assigned to one or more interventions to evaluate the effects of those interventions on health-related biomedical or behavioral outcomes” (Rimel, 2016). the idea that I would be approved for the HSCT only if there were an active clinical trial  (experimental/investigational by definition), yet the rationale to deny my request indicates that the “HSCT remains experimental/investigational for the treatment of MS” (denial letter dec. 23. 16) is circular reasoning and egregious after having received approval (which came only after the insurer requested testing in addition to the Northwestern protocol, and the testing proves I am an excellent candidate).

despite being told, during multiple phone conversations, and in writing (feb. 20. 17) that I have exhausted all of my options for appeal, after speaking with the state department of insurance, it turns out that I have an external appeal available.  had I actually exhausted my appeal options, by submitting an external review, it would have been logged by the state department. interesting, as the report from the Internal Review Organization (paid by the insurer) offers the heading “Notice of External Review Decision” (feb. 6. 17).

rather than bore you with details of the nightmare captured in the five page complaint (accompanied by 240 pages of evidence) I overnighted to the state department last week in hopes to overturn this denial, my intention here is to offer an abridged version of the saga, evidence the battle for insurance coverage, and gear up for the possibility that insurance may just do the right thing and re-instate approval. here’s hoping.

Update (nov. 23. 17): In July, the Kentucky State Department of Insurance determined that Humana broke the law (KRS 304.17A-623) in my case, leading me to believe I had exhausted all appeals when I had one external review remaining. With the help of an attorney, I compiled a convincing case for the external review (425 pages in all), citing facts like “my Plan provides [coverage] for clinical trials approved by the Plan, or that are transplants the subject of a NIH Phase II or higher clinical trial” and citing research “of HSCT and MS [that] shows ‘the complete long-term suppression of all inflammatory activity in a cohort of patients with active and progressing multiple sclerosis’ (Atkins, et al., 2016)” and that HSCT has been proven to “reverse neurological disability and halt progression of disease” (Burt, et al., 2015) and the fact that current conventional treatments will slow progression or decrease number of relapses but will NOT stop progression of disease.

Yet, the external review upheld Humana’s denial. Having survived HSCT with no complications (so far), I am ever grateful for the chance to halt progression of the disease and am now trying to focus on healing and rebuilding strength, yet the thought of raising funds to repay the $125,000 loaned to me by family is overwhelming. I am looking into whether portions of the expenses are eligible to be reimbursed under federal law, though I expect Humana will do their best to avoid paying a dime…so the saga continues.

most of all, I want to acknowledge the tremendous support offered me by friends, family, and strangers through my generosity campaign. If insurance comes through, the funds raised will help cover the required week-long hotel stay (cheaper than a hospital) during phase 1 of the transplant, food and travel, and some of the 10% I will be obligated to pay out of pocket. a thousand times, thank you!

be grateful. be healthy. be well.

Atkins, et al., Immunoablation and Autologous Hematopoietic Stem-Cell Transplantation for Aggressive Multiple Sclerosis: A Multicentre Single-Group Phase 2 Trial (Lancet 2016 Aug 6; 388 (10044):576-85).

Burt, et al., Association of Nonmyeloablative Hematopoietic Stem Cell Transplantation with Neurological Disability in Patients with Relapsing-Remitting Multiple Sclerosis (JAMA 2015 Jan 20; 313(3):275-84).

Nash, et al., High-Dose Immunosuppressive Therapy and Autologous Hematopoietic Cell Transplantation for Relapsing-Remitting Multiple Sclerosis (HALT-MS): A 3-Year Interim Report (JAMA Neurol. 2015 Feb; 72(2):159-69).