HSCT Frequently asked questions
Hematopoietic Stem Cell Transplant (HSCT) is a chemotherapy based treatment in which a patient’s own stem cells are collected prior to the administration of chemotherapy. After the chemotherapy has eliminated the blood cells that carry the message of the autoimmune disease, the patient’s own stem cells are returned to their blood stream to generate a new immune system.
"Autologous HSCT has resulted in 5-year treatment-free remission without evidence of active disease for relapsing remitting multiple sclerosis (RRMS), systemic sclerosis (SSc), chronic inflammatory demyelinating polyneuropathy (CIDP), NMO and for Crohn's Disease" (Burt, Farge, Saccardi, Quiqley, Han, & Snowden, p. 209 as cited in Burt, Farge, Ruiz, Saccardi, & Snowden, 2022).
Clinics in the United States, Mexico, and other countries listed in our locations map offer HSCT for a variety of conditions, including:
- Neurologic Diseases
- Multiple Sclerosis
- Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
- Neuromyelitis Optica (Devics)
- Stiff Person Syndrome
- Rheumatological diseases
- Systemic Sclerosis
- Gastrointestinal Disease
- Crohn's Disease
Each location has its own application criteria. Refer to each location listed on our locations page for the contact information. Applicants are usually required to furnish their medical records to be considered for treatment.
Depending on the location, the cost varies dramatically. Locations such as Mexico and Russia are approximately $60,000 cash. Chicago is approximately $175,000 cash or can be approved by your insurance to cover some costs.
According to research published in January, 2019 by the Journal of the American Medical Association, "Among 110 randomized patients (73 [66%] women; mean age, 36 [SD, 8.6] years), 103 remained in the trial, with 98 evaluated at 1 year and 23 evaluated yearly for 5 years (median follow-up, 2 years; mean, 2.8 years). Disease progression occurred in 3 patients in the HSCT group and 34 patients in the DMT group. Median time to progression could not be calculated in the HSCT group because of too few events; it was 24 months (interquartile range, 18-48 months) in the DMT group (hazard ratio, 0.07; 95% CI, 0.02-0.24; P < .001). During the first year, mean EDSS scores decreased (improved) from 3.38 to 2.36 in the HSCT group and increased (worsened) from 3.31 to 3.98 in the DMT group (between-group mean difference, −1.7; 95% CI, −2.03 to −1.29; P < .001). There were no deaths and no patients who received HSCT developed nonhematopoietic grade 4 toxicities (such as myocardial infarction, sepsis, or other disabling or potential life-threatening events)" (Burt, Balabanov, Burman, et al., 2019).
Burt R.K., Balabanov R., Burman J., et al. Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease Modifying Therapy on Disease Progression in Patients With Relapsing-Remitting Multiple Sclerosis: A Randomized Clinical Trial. JAMA. 2019;321(2):165–174. doi:10.1001/jama.2018.18743
Some doctors know about HSCT, though chances are that your physician is not very aware of HSCT. If they are aware, they might be misinformed or may not have reviewed the latest research (check out our Articles page). Offering your doctor a chance to review articles published in peer-reviewed medical journals will give them opportunity to develop an informed opinion. If they are open to learning more, you could even suggest they request a peer-to-peer conversation with any of the doctors that perform HSCT so that they can find answers to specific questions. Hopefully after learning more your doctor will support you if you choose to pursue HSCT.
Each location listed on our map has been treating patients for various lengths of time, but HSCT was first used to treat severe autoimmune diseases (e.g. systemic sclerosis and multiple sclerosis) approximately 25 years ago, "based on the concept that replacing the immune system after chemotherapy with the patient's own cells could allow for the patient's immune system to 'reboot' without the previous autoimmunity being expressed and also without the need for further immunosuppressive drugs (Chapters 24, 25, and 42)." (FtitzGerald, K., p. 609 in Burt, Farge, Ruiz, Saccardi, & Snowden, 2022).
The myeloablative protocol is intended to completely obliterate the immune cells that carry the negative messaging of autoimmune disease. Without the return of your stem cells after the chemotherapy regimen, your immune system would not regenerate; a person cannot live without an immune system. Most clinics in the US are currently running the myeloablative BEAM protocol as part of the BEAT-MS clinical trial (2019-2025). The myeloablative protocol is currently offered in Canada and other clinics worldwide.
The non-myeloablative protocol is intended to knock out the majority of your immune cells, though leave a small portion in order to ensure that when your stem cells are returned, your immune system can regenerate more quickly; although this process can take time, the stem cells help to reboot an immune system free of the negative messaging of autoimmune disease. The non-myeloablative protocol was offered at Northwestern University in Chicago, IL USA and is currently offered in Mexico, Russia, Sweden, the United Kingdom, and more.
The entire process take approximately 2 months, start to finish.
While every patient's experience with recovery is different, it could take up to a year for full recovery. Some patients are able to return to their normal lives within 6 months of treatment. We encourage you to isten to your body and your doctor. You can learn more about other experiences by viewing our Learn with a Warrior Recovery webinar or exploring episodes of the HSCT Warriors Podcast.
In most locations, family members are an important part of the support for your HSCT experience - whether they stay with you on site or in a nearby location so they can easily visit. In some locations, bringing along a caregiver is required, though in other locations visitors are highly restricted during the isolation phase.
Protocols for HSCT are unique to each clinic, so it is best for you to confirm with your clinic of choice before making travel plans.
Several insurance companies (including Medicare, Humana, Anthem Blue Cross, and United Healthcare among others) have covered all aspects of HSCT including travel expenses, lodging, and per diem. Depending on your policy and coverage, some insurance companies do cover a majority of expenses but refuse to pay for aspects deemed as “experimental” (e.g. harvest, storage and return of your hematopoietic stem cells). It is important to request a full copy of your policy and read it thoroughly to best understand your coverage.
Certain locations require a caregiver (Mexico) to be with you during your stay while others do not. Upon returning home, it is important to listen to your body and communicate regularly with your caregiver(s), including your medical team.
Download our comprehensive Patient Manual resource!
Intended to serve as a guide, you can download and print this Manual (or select pages, or multiple copies of certain pages) and create a three-ring binder to keep yourself organized. It may also be helpful to include a zipper pouch inside the binder to keep important receipts secure.