Department of Health Clarifies Ovarian Cancer Care Report

Posted on Sep 24, 2015 in Ola Lokahi

Last week, the Ovarian Cancer National Alliance released a report titled, “50 States of Teal: Ovarian Cancer Care across America” in which U.S. states were measured on 10 metrics across the continuum of care for ovarian cancer patients, including prevention, diagnosis, treatment and end-of-life care.  Hawaii scored a 6 out of 10 in the report, performing better than 24 other states.  However, the Department of Health says Hawaii’s score should actually be higher than indicated, because it meets four criteria for which it was docked in the report. These are: 1) Access to Oral Contraceptives; 2) Protection from Genetic Discrimination; 3) Use of Palliative Care; and 4) End of Life Care.

The Department of Health has communicated with the Ovarian Cancer National Alliance about the inconsistencies, and hopes that the organization will correct the figures in its next annual review, scheduled for December 2016.  In the meantime, the Department of Health wishes to clarify the data and metrics presented in the report, so that ovarian cancer patients and their family know and understand the services, programs, and protections that are in place for these individuals.

  • Access to Oral Contraceptives: The report states that Hawaii does not have programs that expand family planning services to low income individuals, or policies in place which allowed low income women access to family planning services and oral contraceptives.

However, the Hawaii Department of Health does, in fact, have a Family Planning Program targeting uninsured, low income individuals and others who have difficulty getting family planning services, and that the state of Hawaii does have well-established policies focused on health insurance plans and access to oral contraceptives, HRS§ 432:1-604.5 and § 431:10A-116.6 (1999) and HRS§ 431:10A-116.7 (1999),  however there are no policies specific to low income women.

  • Protection from Genetic Discrimination: The report states that Hawaii state law does not offer any additional protections against genetic discrimination (those beyond the federal Genetic Information Nondiscrimination Act).

Hawaii actually has had stronger anti-discrimination laws than the Genetic Information Nondiscrimination Act since the late 1990s. State laws HRS§432:1-607; and HRS§431:10A-118 / HRS§432:2-103.5 protect against health insurance, health maintenance organizations, and self-insured discrimination due to genetic information. This means that, in Hawaii, genetic information cannot be used to deny or limit coverage or establish eligibility, continuation, enrollment or premium payments.  Health insurers cannot request or require collection or disclosure of a person’s or family member’s genetic information, or disclose it without the written consent of the individual.

 

  • Use of Palliative Care: The data used for this metric, collected by the Center to Advance Palliative Care, shows that only 58% of medium to large Hawaii hospitals have a palliative care program, lower than the national average of 63% in 2014. States were awarded a point if the percentage of medium to large hospitals with a palliative care program in place was higher than the national average.

It is important to note that the data used for this metric was collected only from hospitals who voluntarily submit data to this organization, and it therefore does not represent an accurate picture of palliative care programs currently being provided in Hawaii’s hospitals. In fact, only three Hawaii hospitals submitted data, when in fact eight medium to large hospitals in Hawaii have palliative care programs currently in operation.

  • End of Life Care: States were awarded a point if they had higher than average rates of cancer patients enrolled in hospice in their last month of their life.  The data used for this metric, collected by the Dartmouth Atlas, shows that 62% of Hawaii patients received hospice care in the last month of life, compared to the national average of 63%.

However, the Dartmouth Atlas collected information from only about 2,000 of the 11,433 annual deaths in Hawaii in 2014 (about 14%), representing only a small fraction of the actual number of resident deaths. Other datasets which provide more complete information are available.  For example, the Hospice Analytics data sets a national average as determined by those people that have died in the last year that have used Hospice care in the last year of life. This definition is much closer to the goals of Hospice that provide palliative care services, and not just in the last month of life for terminally ill patients. According to the Hospice Analytics data, Hawaii has a 40% rate of people who have died that used Hospice care in the last year of life. The highest state rate according to this data set is Arizona with a 63% rate.

For more information about ovarian cancer and the Department of Health’s cancer programs, including the Comprehensive Cancer Control Program, and Breast & Cervical Cancer Control Program, please visit: https://health.hawaii.gov/cancer/.