While patients who are cured from cancer can expect to lead long and
productive lives, we do not know the extent to which a diagnosis of cancer
affects employability, insurability, and lifestyle of individuals with
Hairy cell leukemia is a rare lymphoproliferative disorder; 75% to 90% of
affected individuals achieve a long-term remission following chemotherapy with
cladribine (Leustatin).[1-3] Hairy cell leukemia patients who achieve remission
are believed to have a life expectancy similar to that of the general
We investigated the effects of this cancer diagnosis on finances, life and
health insurance, employment, and lifestyle in hairy cell leukemia patients
with a long-term remission.
Introductory letters were mailed to all patients who had been treated by a
specialist in the Chicago area: 31 of the 34 patients who signed a consent form
completed the questionnaire.
The survey included questions regarding sociodemographic characteristics
(age, years since diagnosis, marital status, educational level, race/ethnicity,
employment status, and income); health insurance (provider type, changes in
premium, yearly deductible, copayments, etc); life insurance history (policy
holdings prior to and after diagnosis with hairy cell leukemia); and changes in
lifestyle habits (use of vitamins, alternative medicine practitioner,
The mean age at the time of the survey for the 31 respondents was 56.6 years
(range, 27 to 82). The mean age of diagnosis was 48.7 years (range, 24 to
73). All but one of the patients identified themselves as white; one patient
did not indicate his ethnicity. The majority of the respondents were married
Overall, the participants were well educated, with 65% reporting having
earned a bachelor’s degree or higher, and 100% at least a high school
diploma. Half were employed at the time of the survey, while 37% were retired
and 13% were unemployed; 79% reported having an annual income of $50,000 or
1. Laura F, Rondelli D, Zinzni PL, et al: Long-lasting complete remission in
patients with hairy cell leukemia treated with 2-CdA: A 5-year survey. Leukemia
2. Piro LD, Carrera CJ, Carson DA, et al: Lasting remission in hairy cell
leukemia induced by a single infusion of 2-chlorodeoxy-adenosine. N Engl J Med
3. Saven A, Piro LD: Treatment of hairy cell leukemia. Blood 79:1111-1120,
4. Hounshell J, Tomori C, Newlin RC, et al: Changes in finances, insurance,
employment, and lifestyle among persons diagnosed with hairy cell leukemia. The
Oncologist 6:435-440, 2001.
5. Hoffman B: Cancer survivors’ employment and insurance rights: A primer
for oncologists. Oncology 13:841-846, 1999.
6. Kornblith AB, Herndon JE II, Zuckerman E, et al: Comparisons of
psychosocial adaptation of advanced stage Hodgkin’s disease and acute
leukemia survivors. Ann Oncology 9:297-306, 1998.
7. Burton L, Zones J: The Incidence of Insurance Barriers and Employment
Discrimination Among Californians With a Cancer Health History in 1983: A
Project. Oakland California Division of the American Cancer Society, Oakland,
8. Sumner B, Dowd B, Pheley AM, et al: Denial of health insurance due to
preexisting conditions: How well does one high-risk pool work? Med Care Res Rev
Ms. Newlin and Ms. Lee are project managers, Northwestern University Medical
School. Dr. Bennett is professor of medicine, Northwestern University Medical
School, Robert H. Lurie Comprehensive Cancer Center, and director of HSR&D,
VA Chicago Health Care SystemLakeside Division.