A physical, mental, and financial nightmare.
Leukemia Can Be Particularly Devastating for Young Adults
Leukemia (or any type of cancer, for that matter) is a terrifying diagnosis at any age. To have to deal with life-altering cancer treatments, chemotherapy, immunosuppression, infertility, bone marrow transplants, and quite literally come to terms with your own mortality in your early 20s, at a time when you should have your entire life ahead of you and should be planning college, careers, and weddings…not cancer treatments, insurance, and medications…is unspeakably difficult.
Aside from the obvious physical, mental, emotional, and spiritual anguish, there’s also a nearly unbelievable financial toll on patients and families. Leukemia treatment and follow-up care can last for several years, and the direct and indirect financial costs are staggering.
At one point, there was a clerical error with Jackson’s insurance coverage that left him uninsured (by mistake) for a couple of weeks. His outpatient care (he was not hospitalized at the time), came to $251,819.50 per month.
On top of that, the cost of prescription drugs for leukemia treatment is staggering. One of these (a targeted therapy drug called Quizartinib) cost around $30,000 per month at the time without insurance. Another common leukemia drug (Gilteritinib) was $29,000 for a 90-day supply. These are just a couple of examples (and the newer and more promising the drug, the more expensive it tends to be).
But That’s Not All!
Leukemia patients also need 24/7 caregivers, both while hospitalized (often for 30 to 90 days at a time, several times per year), and while undergoing outpatient care (usually with several weekly follow-up appointments that can take up to a full day).
This usually means someone has to quit work to care for their loved one during their leukemia treatment. In our case, this lasted over two years, and we are forever grateful that Claire was able to be with Jackson almost 24/7 during this time.
Another great example of the indirect costs of a leukemia diagnosis for families and caregivers is the logistical challenge associated with receiving a bone marrow transplant (which is the standard of care and often the only possible cure for patients who are healthy enough to survive the procedure).
Most families do not live within reasonable commuting distance of a major cancer research center where bone marrow transplants are typically offered, and the procedure requires:
- A 30 to 90 day hospital stay under controlled conditions, with a 24/7 caregiver who may be unable to leave the hospital. This of course means that other family members often stay nearby in a hotel or Airbnb in case of emergencies, to deliver food and other necessities, and to allow the caregiver to rest, shower, etc., nearby if they are able to take a break.
- A 30 to 90 day follow-up stay within 30 minutes of the cancer center. For many families, this means renting a furnished apartment for up to three months, on top of their regular mortgage/rent and utilities back home.
Life Interrupted
Young adult patients often find themselves feeling isolated and alone, even with strong family support; their friends and colleagues move on with their lives, graduate from college, get married, and start their careers, while the devastated patients are left behind, trying to pick up the pieces.
Renowned author, artist, and acute myeloid leukemia survivor Suleika Jaouad has referred to this phenomenon as Life Interrupted.
Even the Best Outcomes Leave Quite a Wake in Their Path
Even positive outcomes of a leukemia diagnosis in your twenties can leave a lasting impact on survivors. Many patients who survive leukemia in their twenties are left with physical, mental, emotional, and financial burdens that they will carry throughout their lives, ranging from fertility and immune system issues, to dependency on expensive medications, to the obvious ever-present fear of relapse.
Every Journey is Different
My intent is certainly not to discourage. There are several different types of leukemia, and some are easier to treat and cure than others. No two paths are exactly alike, and many patients enjoy long and happy lives even after receiving a terrible prognosis.
But we cannot ignore the very real physical, emotional, spiritual, and financial toll this terrible disease often exacts from its victims, especially young adults.