Insurance for autosomal dominant polycystic kidney disease patients prior to end-stage renal disease.

There recently has been substantial dialogue about access to health insurance for Americans. This discussion has highlighted the issues of pre-existing diseases and portability as barriers to adequate health insurance coverage. For these reasons we decided to investigate the issues relating to health insurance and life insurance coverage experienced by patients with autosomal dominant polycystic kidney disease (ADPKD). A questionnaire-based study was conducted. Two hundred thirty-eight of 354 subjects responded. There was no significant difference in gender, age, number of children, or level of renal function between responders and nonresponders. Twenty-eight of the 238 respondents had eight-stage renal disease and were eligible for Medicare; these patients were not used in the analyses relating to health insurance, but were used in the analyses relating to life insurance. Although 87% of the ADPKD patients were concerned about the availability of health insurance, 88% were currently insured. Eight-three percent of subjects with health insurance obtained it through their own or their spouse's employer. Of those individuals with employer-based health insurance who were aware of their ADPKD, only 25% informed their employer and 35% informed their insurer at the start of coverage. Fifty-seven percent of those with employer-based health insurance had this availability determine their job choice and 37% stayed in the job because of health insurance. Thirty percent of the subjects had previously been denied health insurance. Although subjects were less concerned about life insurance, many of the same types of issues and factors were present. Thus, the current lack of universal health care in this country creates anxiety and difficulties for patients with ADPKD. The effect of a pre-existing condition and the lack of portability resulted in denials, work choice limitation, and unwillingness to share health information for this patient population with a hereditary, systemic disease.