Room for Improvement: Utah receives low marks for care, education, research and quality of life for women with ovarian cancer

Story by Jamie Lampros
(Standard-Examiner correspondent)
Mon, Jun 18, 2012
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A first-of-its-kind report card released earlier this month ranks Utah 33rd in the nation when it comes to access to care, education, research and quality of life for women with ovarian cancer.

The report, “Ovarian Cancer: A Call for State Action,” examined laws, policies and programs in those four categories. Issued by the Ovarian Cancer National Alliance, the report ranked all 50 states and the District of Columbia on provision of care to women with the deadly disease.

Utah shares the 33rd spot with Hawaii. California ranked No. 1 in the nation.

The report found that every state has room for improvement, said Cara Tenenbaum, vice president for policy and external affairs for the alliance.

“The good news is that our research uncovered many examples of programs that work, from laws ensuring coverage of second opinions to local groups providing support services and education around ovarian cancer. One way legislators in Utah could support women with ovarian cancer is by updating the state’s cancer plan to include elements of this disease.”

The state’s 2006-2011 Comprehensive Cancer Control Plan briefly touches on goals and strategies to address ovarian cancer, as well as providing a link to the Utah Cancer Action Network, a network of individuals and agencies committed to reducing the cancer burden of Utahns.

However, Tenenbaum said the plan needs to be updated to include more information about the disease, as well as a list of resources for women.

Tenenbaum said that although Utah has access to quality care, women diagnosed with ovarian cancer may be financially vulnerable during their treatment because the state does not have laws that cap co-payments, nor does it require coverage of oral chemotherapy. The state also does not have any support groups for those diagnosed with the disease — an important aspect of quality care for women with ovarian cancer.

The report card breaks down how well each state is doing in each of four categories.

Access to care

When it comes to access to care, Utah gets a score of 13 out of a possible 31. According to the alliance, direct access is a very important factor in the treatment of ovarian cancer. Often, a gynecologist is the most appropriate health-care provider to visit when a woman is having symptoms of ovarian cancer.

But some insurance plans require she have a referral to see a specialist. This can cause a delay in prompt care.

Second opinions are also important, according to the alliance, and women may not decide to seek that opinion, especially if it’s not covered by her insurance.

In addition, access to clinical trials provide scientific data about new treatments and provide patients with drugs and other therapies not available to the public at large. This is very important for women with ovarian cancer, but only 3 percent of patients with cancer participate in clinical trials. Other forms of access graded included insurance coverage of medication, and diagnostic and genetic testing.

Education

Utah completely fails when it comes to education and awareness of ovarian cancer. The state got a zero out of 10 score.

The alliance states that an informed public makes it more likely that women will seek care when they experience symptoms. Therefore, public education regarding the risks and symptoms can help to ensure women will seek help more quickly.

Quality of life

When it comes to quality of life, the state scores a 7 out of a possible 17.

This category includes psychological and psychosocial needs, palliative care, survivorship, patient navigator programs and end-of-life programs.

Research

Utah also scores a 7 out of a possible 17 for research support.

The alliance found that many states provide funding to cancer centers within the state. However, it could not determine whether that money directly funds ovarian cancer research or treatment.

Despite improvements in diagnosing and treating ovarian cancer, death rates have not changed significantly in the more than 40 years since the War on Cancer was declared. The alliance points out that research is essential to find better tools for diagnosing and treating the disease.

The full report can be found at www.ovariancancer.org/report-card.

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