Hairy Cell Leukemia Diagnosis Affects Finances, Lifestyle

May 1, 2002

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 long-term survival.

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 long-term survival.

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 population.

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, psychological counselor).

The mean age at the time of the survey for the 31 respondents was 56.6 years (range, 27 to 82).[4] 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 (87.1%).

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 more.

Almost one quarter (24%) of the respondents reported an increase in their health insurance premium following their diagnosis of hairy cell leukemia; 14% reported an increase in deductibles. Some of the respondents also experienced increases in copayments for physician visits, pharmaceuticals, and other medical services (17%, 19%, and 33%, respectively). Thirteen percent reported that their benefits were stopped or that coverage was refused due to their hairy cell leukemia diagnosis.

The majority of the respondents (84%) owned a life insurance policy prior to their hairy cell leukemia diagnosis. However, of the 13 patients who attempted to purchase a policy following their diagnosis, 10 (77%) faced difficulty obtaining a policy or were turned down.

The majority of patients reported that their hairy cell leukemia had affected their lifestyle habits (exercise, nutrition, etc), with 48% saying the impact was great and 32% reporting a little impact.

More than half (52%) of the respondents reported adopting a healthier diet since their experience with hairy cell leukemia. Similarly, 61% of patients surveyed indicated that they exercised more frequently. Patients also reported an increased use of vitamins or herbal nutritional supplements (84% following diagnosis, compared with 26% prior to diagnosis), alternative medicine practitioners (16% vs 7%), and psychological counseling (16% vs 7%).

Finally, patients voluntarily included comments about how their lives changed as a result of their experience with hairy cell leukemia. Several patients commented that that their decisions about and opportunities for employment were affected by their diagnosis. For example, one patient postponed retirement and several patients reported difficulty finding a new job due to their cancer history. Patients also reported appreciating their family and loved ones more and having a greater appreciation for life.

Prior Studies

Prior studies have reported a higher percentage of cancer survivors who faced difficulties in obtaining life insurance, including refusal of coverage for cancer treatment, increased premiums and deductibles, and policy cancellations.[5] Kornblith et al reported that half of the survivors of Hodgkin’s disease or leukemia surveyed experienced problems with their health insurance.[6] In another study, Burton and Zones found that 30% of all cancer survivors experienced barriers to obtaining health insurance.[7]

Although our study indicated that a significant proportion of hairy cell leukemia patients faced increases in insurance premiums (24%), only 13% reported being refused for a health insurance policy or having their policy terminated.

Socioeconomic and racial differences between the patients that we studied and those studied previously may account for the difference in results.

Sumner showed that patients who were denied health insurance coverage were more likely to have a lower income and be nonwhite.[8] Thus, in our study we would expect to find smaller percentages of patients reporting health insurance difficulties given that the population surveyed was fairly homogeneous in terms of income and race.

Conclusion

Our findings indicate that the lives of long-term cancer survivors are significantly affected by their experience with cancer. Even after successful treatment, patients experienced changes in employment, health insurance, finances, and lifestyle. Specifically, patients’ concern over the loss or discontinuity of health insurance was a major factor in employment decisions. In an employer-based health insurance system as in the United States, cancer survivors are at risk for falling through the safety net of the health care system. 

References:

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 11:629-632, 1997.

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 332:1117-1121, 1990.

3. Saven A, Piro LD: Treatment of hairy cell leukemia. Blood 79:1111-1120, 1992.

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, California, 1982.

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 54:357-371, 1997.

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 System—Lakeside Division.