Financial Planning for a Transplant
September is Sickle Cell Awareness month so earlier this year, I launched a web project titled "The Diary of a #SickleCellProdigy". This content series gives audiences a closer look at a patient's life with and without sickle cell disease. The awareness campaign was centered around patient education and support, serving as a first-hand guide for patients, caregivers, and providers who want to learn more about curative therapies for sickle cell.
One of three cures for this debilitating disease is an allogeneic stem cell transplant that's available to patients with severe complications like stroke, recurrent vaso-occlusive crisis, a history of acute chest syndrome, recurrent blood transfusions, or renal damage. Clinical trials are the primary way for researchers to evaluate if a new treatment can cure a life-threatening disease. As a transplant recipient, I wanted to share research-based content with prospective patients in the global SCD community.
Over the course of 4 weeks, video interviews with research experts at the National Institute of Health (NIH) offered side-by-side comparisons of a patient's health journey before and after transplantation. To highlight the nuances of a clinical trial, the series touched on different topics including outpatient recovery, exercise and nutrition, the importance of mental health, chronic pain management, and financial planning.
An exceptional warrior
In 2017, while serving on the Bold Lips for Sickle Cell (now Bold Plus+) executive board, I met an exceptional advocate who left an imprint on my heart and quickly became a member of my #SickleCellTribe. Jazmine Alexis Rivera was a Latina sickle cell YouTuber, content creator, and the Marketing & Special Projects Manager for the Sickle Cell Community Consortium.
She received a successful haploidentical bone marrow transplant at City of Hope National Medical Center in May 2018 but developed a serious infection that caused other health complications. Sadly, she passed away that November, but left a remarkable legacy in the sickle cell community with her devotion to raising awareness among English and Spanish speakers through her YouTube channel - BeautyWithinSickleCell & Belleza Dentro Las Celulas Falciforme.
A conversation with Jazmine's mother, Maria
Weeks before the 3rd anniversary of her death, I sat down with her mother, Mrs. Maria Rivera, for an in-depth interview to discuss the cause of death, the importance of health insurance and financial planning before a transplant, and the Jazmine Rivera Beauty Within Sickle Cell Initiative.
Clinical trial participants generally do not have to pay for any medical costs associated with the research study; however, non-medical expenses are incurred during the 6-month transplant process. These expenses may include food, lodging, transportation to and from the hospital/transplant center, air travel, long-distance phone calls, lost wages (if the employer does not pay for time spent away from work), and childcare.
1. What out-of-pocket expenses were associated with your daughter’s clinical trial? Did she have health insurance?
Jazmine had health insurance that was provided by Kaiser Permanente, but the program did not cover transplantation because it was classified as a clinical trial at the time. Clinical trials were not approved by insurance companies so Jazmine had to apply for Medicare and some of the medications needed for treatment were not covered.
Once enrolled in the trials, transportation costs had to come out of our pocket. We needed a reliable car and money for gas on a weekly basis. The hospital was about an hour and a half away from our home but with traffic, it could range from 3-5 hours. That meant we needed money for food and extra money for gas. City of Hope had housing accommodations but in the beginning, they said we had to pay $69 per day until the cost was approved by our insurance provider.
2. Did the research hospital offer any form of financial assistance or grants? If yes, did it cover standard treatment for Jazmine, or were there add-on costs/procedures involved?
I remember the social worker talking to Jazmine and offering a scholarship or grant where she received a one-time payment of $200 but other than that, there was no type of support for sickle cell patients. Financial assistance was mostly for cancer and leukemia patients. They provided gas cards for up to $500, gift cards for stores like Walmart and restaurants like Panda Express, but these programs were for cancer patients only.
I received one $75 gift card after making complaints about financial assistance but the card did not have any funds when we tried to use it. That was humiliating because clinical trials for sickle cell disease should make financial provisions for patients and caregivers.
3. What financial toll did the transplant take on the Rivera family?
It was very hard because my husband was the only financial provider at the time. He had to work a lot of overtime to help with our expenses.
It got worse when Jazmine contracted a fungal infection caused by the chemotherapy and we had to pay about $200 for a two-week supply of medications that didn't even work. They tried alternative medications that did not work either, but those expenses were covered by the insurance company. In the United States, there was no cure for her infection at that time.
4. On a scale of 1 to 10, how important is it to financially plan for a prospective clinical trial?
I would say a definite 10 out of 10. It is very important to save as much as you can because there will be emergency expenses when you least expect them. For example, we had to cover transportation costs to and from the transplant center. There was so much wear and tear on the family car that the tires blew on the freeway, the day we were coming back from surgery. That repair was at least $650 that we did not expect nor did we plan for it. At one point, all tires and the brakes in the car had to be replaced.
5. What advice do you have for parents who have children participating in a clinical trial?
Learn how to ask for help from family members, colleagues, and friends. Being the primary caregiver for a transplant patient is a lot of work and a significant commitment to make. There were days when I was physically, mentally, and emotionally exhausted. Please save money if you can. Ask for any type of support available to patients in the hospital where the clinical trial is scheduled to take place.
Bonus patient tip:
Before the transplant is scheduled or for any upcoming medical procedures like a hip replacement, save or fundraise an estimate of $10,000 to $25,000 for expenses not covered in the clinical trial agreement.
Have you taken the Sickle Cell In America survey yet?