Ovarian Cancer National Alliance

Uses of Medical Histories are Curtailed Under New Law (NYTimes)

ctenenbaum — Wed, 18 Nov 2009 19:38:01 +0000

Law Seeks to Ban Misuse of Genetic Testing

Published: November 15, 2009

The most important new antidiscrimination law in two decades — the Genetic Information Nondiscrimination Act — will take effect in the nation’s workplaces next weekend, prohibiting employers from requesting genetic testing or considering someone’s genetic background in hiring, firing or promotions.

The act also prohibits health insurers and group plans from requiring such testing or using genetic information — like a family history of heart disease — to deny coverage or set premiums or deductibles.

“It doesn’t matter who’s asking for genetic information, if it’s the employer or the insurer, the point is you can’t ask for it,” said John C. Stivarius Jr., a trial lawyer based in Atlanta who advises businesses about the new law.

The biggest change resulting from the law is that it will — except in a few circumstances — prohibit employers and health insurers from asking employees to give their family medical histories. The law also bans group health plans from the common practice of rewarding workers, often with lower premiums or one-time payments, if they give their family medical histories when completing health risk questionnaires.

“Genetic information is very broad,” said J. D. Piro, a principal in the Health Care Law Group at Hewitt Associates. “It doesn’t simply include my own genetic information, such as do I have a risk for cancer. It also includes my family medical history — do I have any relatives who have had cancer or leukemia.”

Genetic tests help determine whether someone is at risk of developing an inherited disease or medical condition. These tests identify variations in genes, like whether a woman has a predisposition for ovarian cancer.

Such testing can help determine which course of treatment might work best for fighting a specific cancer or for helping a patient process a specific drug.

The new law (called GINA) was passed by Congress last year because many Americans feared that if they had a genetic test, their employers or health insurers would discriminate against them, perhaps by firing them or denying coverage. In a nationwide survey, 63 percent of respondents said they would not have genetic testing if employers could see the results.

“The message to employees is they should now be able to get whatever genetic counseling or testing they need and be less fearful about doing so,” said Peggy R. Mastroianni, associate legal counsel for the Equal Employment Opportunity Commission.

The act takes effect Nov. 21 for all employers with 15 or more employees. It applies to group health insurers whose plan years begin on or after Dec. 7, and it took effect for individual health insurance plans last May. The act does not apply to life insurers.

The act would ban a company from not promoting a 49-year-old to chief executive because it knew his father and grandfather died of heart attacks at age 50.

“There’s an absolute ban on the use of genetic information to make any kind of decision about employment,” said Christopher Kuczynski, assistant legal counsel with the commission.

Sharon F. Terry, chairwoman of the Coalition for Genetic Fairness, a group that backed the legislation, told of a woman who had informed her office she was having a genetic test to learn whether she was predisposed to breast cancer. She was soon fired, with her boss saying the company could not afford to keep her if the results were positive.

One episode that created momentum for the legislation involved the Burlington Northern and Santa Fe Railway Company, which conducted genetic testing on several employees without their permission.

David Escher, a track maintenance worker in Nebraska who developed carpal tunnel syndrome on both wrists, said he was mystified why Burlington Northern ordered him to see a doctor who drew seven vials of his blood. Mr. Escher later learned that the railroad wanted to do genetic testing to determine whether he had a predisposition for carpal tunnel — in an effort to reduce its medical and workers’ compensation costs.

“I was really mad,” Mr. Escher said. “They were trying to do this through the back door. With genetic testing, they can learn lots of things about you that you don’t even know. If they can do genetic testing and find some problems, you might end up getting fired.”

Burlington Northern reached a $2.2 million settlement in 2002 that was distributed to 36 workers who were either tested or asked to submit to blood tests.

While the act makes it illegal for employers to intentionally acquire genetic information, it includes a “water cooler” exception, as in a case where a manager overhears one employee telling another that his father had a stroke.

Under the act, it is legal for a manager to garner genetic information from an obituary, for instance that an employee’s mother died of breast cancer. And if a manager asks why a worker took off a week to care for his father under the Family Medical Leave Act, it generally will not be considered illegal if the employer learns that the worker’s father has pancreatic cancer.

The act, however, prohibits use of such inadvertent knowledge to alter the terms, conditions or privileges of employment.

“The challenge becomes what if down the road, the employee has a lot of absences or his performance is off, and you discipline the employee,” said Michael P. Aitken, director of governmental affairs for the Society of Human Resource Management. “The employee could come back and say, ‘That’s because you knew I had a genetic marker.’ ”

The act and its accompanying regulations allow group health plans to request family medical histories to help determine whether an employee should be placed in a disease management or wellness program to combat, for instance, high blood pressure. The rules say employees must give that information voluntarily and the group plan cannot request such information before health plan enrollment or use it in any way for underwriting.

Under the rules, group health plans, in seeking information for wellness programs, cannot attach a request for family medical history to any penalty or, as is far more common, any benefit. But wellness programs can request family medical history if there is no financial benefit attached.

“This can be a big deal,” said Mr. Stivarius, the Atlanta lawyer. “A lot of people incentivize employees to provide this family medical information. They give them some extra paid time off if they participate in surveys. Now they can’t do that.”

Mr. Piro of Hewitt said many employers were only now realizing that their health risk questionnaires might violate the law.

“Employers have to scramble to scrub this information out,” he said. “The alternative is to modify their reward structures so that they’re not considered to be purchasing or requiring the genetic information.”

Susan Pisano, a spokeswoman for America’s Health Insurance Plans, said the rules were a challenge for insurers because they take effect during the open enrollment period. She said her group disagreed with the federal agencies’ interpretation that the law bans incentives to encourage employees to fill out family medical histories.

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ABC Special Interview with Janet Jackson

gmorales — Wed, 18 Nov 2009 19:14:33 +0000

Wednesday, November 18, 2009 at 10:00pm EST on ABC, Janet Jackson will be featured in a special interview called In the Spotlight with Robin Roberts.

In 2008, Cartier named Janet Jackson as one of their LOVE ambassadors. With this honor, Janet designated the Ovarian Cancer National Alliance as her charity of choice and recipient of Cartier’s LOVECHARITY campaign. Over the past two years, this campaign has raised over $181,000 to benefit the work of the Ovarian Cancer National Alliance.

Ovarian Cancer National Alliance Board member and ovarian cancer survivor, Annette Leal Mattern, seen here with Janet Jackson.

Click here for more information about the ABC Special interview.

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Christy Schmidt’s Kaleidoscope experience

gmorales — Wed, 18 Nov 2009 16:06:01 +0000

What a fabulous event! On Monday, November 16, 2009, I attended the taping of Kaleidoscope – a show celebrating skating, song and survivorship. You can see it on Thanksgiving Day on FOX at 4:00pm EST. You’ll definitely hear the roar of appreciation from a mostly cancer survivor crowd.

Scott Hamilton skated publicly for the first time in six years after a second bout of brain cancer – and yes he can still do those amazing back flips – he did 3 to standing ovations. Dorothy Hamill, also a survivor, was as graceful and fast across the ice as ever. Olivia Newton-John, the 3^rd survivor, hosted and sang at the event. We were also treated to David Foster, Kristi Yamaguchi, Nancy Kerrigan, Viktor Petrenkov, Rachel Flatt and American Idols David Archuleta and Katharine McPhee.

Afterward, I was lucky enough to attend a reception, meet these stars and tell them about ovarian cancer and all of us. They were impressed by our work at the Ovarian Cancer National Alliance. Most of all they wanted to send all of you a message of hope and good wishes and, as Olivia Newton-John puts it, a wish that we all become “thrivers, not only survivors!”

Christy Schmidt, Ovarian Cancer National Alliance President-elect and ovarian cancer survivor seen here with singer, actress and fellow cancer survivor, Olivia Newton John. Also seen here on the right, Mary Gant, long-time supporter of the Ovarian Cancer National Alliance and experimental scientist at the National Institute of Health (NIH).

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Virtual Holiday Dinner Party … and you’re invited!

gmorales — Tue, 17 Nov 2009 15:32:15 +0000

At a virtual holiday dinner party, there is no calorie counting, no guilt, no wrestling with a tuxedo or squeezing into a cocktail dress. You can enjoy our virtual holiday dinner party from the comfort of your home.

You choose the celebration you want, and we’ll handle the rest. This is a very easy and fun way to contribute to the fight for women’s lives and be assured that 100% of your contribution supports life-saving work of the Ovarian Cancer National Alliance.

Whether you’re a vegan or carnivore, prefer an intimate splash or an all out bash, our virtual holiday dinner will satisfy any appetite. Click here to view all our holiday menu selections and contribute to a great cause at the same time.

With your selection, and your contribution to our dinner, you will receive a tasty collection of our favorite holiday recipes –from drinks to desserts–and all the courses in between.

Holiday favorites include recipes from celebrity chef and ovarian cancer survivor, Laurey Masterton.

Whether you celebrate Christmas or Hannukah, or just want to get into the spirit of holiday good cheer, bon appetit and Happy Holidays from all of us at the Ovarian Cancer National Alliance, working to save women’s lives.

Don’t forget to forward the invitation to your friends!

You can also check out the holiday menu selections by visiting www.ovariancancer.org/party.

And wait, there is more …

You could win one of the following three prizes:

2 tickets to Turn Up the Heat on Ovarian Cancer! A Celebration of Women’s Chefs on February 2, 2010 at the Ritz-Carlton Hotel in Washington, DC. (Valued at $500.) The Ovarian Cancer National Alliance’s signature Gala provides a festive opportunity to sample in person gourmet recipes from dozens of renowned women chefs from the DC area. For more information about the Gala, visit www.ovariancancer.org/gala.

A Jack LaLanne Teal Juicer – the ultimate juicing machine. You can make fresh, healthy juice in seconds. It’s a must have for any kitchen. For more information on the Teal Juicer, click here or visit http://www.powerjuicer.com/order-express-ocna.html

A basket full of Teal including a tote bag, a sweatshirt, a stained-glass angel ornament, symptom cards and much more! All these items and more can be found on our online store. Click here to browse around and check out our new holiday gift ideas.

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SHARE presents a round-table discussion

gmorales — Mon, 16 Nov 2009 19:40:32 +0000

Health Care Reform: How Will It Affect People with Breast or Ovarian Cancer?

When: Thursday, December 3, 2009 at 6:00pm EST

Where: 1501 Broadway, Suite 704A, at 43rd Street, Manhattan, New York

What: SHARE: Self-help for Women with Breast or Ovarian Cancer and New Yorkers for Accessible Health Coverage present a round-table discussion on the status of health care reform and its impact on those dealing with serious diseases, focusing on breast and ovarian cancers. NY State Assembly Member Richard Gottfried will facilitate the discussion, which includes a group of distinguished experts and advocates, including Karen Orloff Kaplan, Chief Executive Officer of Ovarian Cancer National Alliance and Fran Visco, President of the National Breast Cancer Coalition.

Please register by calling (212) 719-2943, ext. 338

For more information about SHARE and/or the event, click here.

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Passage of House Health Reform Potential Impact for Women with Ovarian Cancer

ctenenbaum — Fri, 13 Nov 2009 20:54:45 +0000

With the passage of the Affordable Health Care for America Act (H.R. 3962) in the House of Representatives this past weekend, women with ovarian cancer and their families may be wondering how this bill will affect their health care coverage. Listed below are some major provisions of the bill. The House bill is not the final Health Reform bill – we will not know what final provisions will be enacted until a joint bill is passed by both Houses.

Most Americans will be required to have insurance

The bill will require all individuals to have health insurance and will levy a penalty on those without coverage, starting in 2013. Exceptions will be granted for religious or financial reasons.
Health Insurance Exchanges will be organized. Individuals who do not already receive health insurance through their employer may purchase health insurance through Health Insurance Exchanges. These exchanges will offer insurance plans that include a minimum benefits package and comply with other cost and quality standards.

Benefits

Requires coverage for individuals with pre-existing conditions. Additionally, no insurers will be allowed to put annual policy limits or lifetime policy limits into effect or cancel a policy when individuals file expensive claims.
Insurance Companies prohibited from charging women more based on gender. A practice known as gender rating, where women are often forced to pay higher premiums for the same coverage men receive will be eliminated.
Eliminates Cost-Sharing for preventive services in Medicare and Medicaid including mammograms and Pap tests.
Provides wellness grants for small employers to implement a qualified wellness program.

Coverage

Employers will have to offer coverage to employees and pay for a majority of the premium costs.
A national “Health Insurance Exchange” will be created for individuals who do not already receive health insurance through their employer. Additionally, states that comply with federal standards will be eligible to run their own health insurance exchanges. Within the exchanges, insurance plans provided by private companies will be available for purchase, as well as a competing government-run health insurance plan.
- Individuals who currently are uninsured, have expensive coverage through an individual plan, or who work for small businesses may seek a health insurance plan through the Exchange over the next few years.
- Individuals and families can purchase insurance on the exchange if they are not covered by employer-sponsored insurance or if they do not have other federal insurance including Medicare, Medicaid, TRICARE or Veteran Affairs (VA) coverage.
- If a person is a full-time employee receiving coverage through their work, they will not be able to shop for insurance through the Exchange unless their employee-provided coverage accounts for more than 12% of their income. By 2015, the Secretary of Health will determine whether employees of large businesses may enter the Exchange.

Costs

Low and middle-income individuals will receive a federal subsidy to enable them to afford their purchase of health insurance. Financial assistance to pay for health insurance will be provided to families with incomes up to 400 percent of the Federal Poverty Level. For example, assistance will be provided to a family of four with an income below $88,200. (Visit the Federal Poverty Guidelines to see more).
The bill places caps on out-of-pocket spending. Individuals will have annual out-of-pocket spending limits of $5,000 per year, and families will have annual out-of-pocket spending limits of $10,000 per year. Lower-income individuals and families with incomes below 350 percent of the Federal Poverty Level will have lower out-of-pocket limits.
Small businesses will receive a tax credit to assist them in offering health insurance to their employees.

Changes to Existing Programs

Medicare Part D Gap will be reduced and eventually eliminated. There will be a $500 reduction in the coverage gap (also known as the Medicare Part D “doughnut hole”). By 2019, the “doughnut hole” will be completely eliminated.
Provides a discount on brand name drugs purchased through Medicare.
COBRA coverage may be retained until the exchange is established.
Provides numerous incentives for coordination of care, enactment of alternative medical liability laws, administrative simplicity and use of comparative effectiveness determinations.

What’s next?

Health care reform is far from over. First, the Senate must pass either this bill or its own bill. Next, a Conference Committee must be formed to combine the House and Senate bills. Then that combined bill must be voted on by both the House and Senate. Once passed, the bill will be signed by the President. Many do not expect the President to sign a health reform bill until February, 2010.

For more on this topic, please see the Ovarian Cancer National Alliance’s Principles of Health Care Reform.

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Advocates work to prevent slash in Ovarian Cancer Research Funding

gmorales — Wed, 11 Nov 2009 18:08:50 +0000

Responding to a threat of a funding reduction to the Department of Defense’s Ovarian Cancer Research Program, during the last week of October the Ovarian Cancer National Alliance urged advocates to contact their Members of Congress to appeal to the Appropriations Defense Subcommittee to increase funding for the research program.

As a result of the Ovarian Cancer National Alliance’s advocacy efforts, 14 Senators and 77 Representatives showed their opposition to the funding cut by signing a Dear Colleague letter sent to the Subcommittee Tuesday, November 3, 2009.

The Dear Colleague letter, written by Senator Robert Menendez (D-NJ) and Congresswoman Rosa DeLauro (D-CT), requested that the Subcommittee allocate the $25 million set forth in the House version of the Defense bill, and not the $10 million outlined in the Senate version of the bill. The Senate funding level represented a 50 percent reduction from the $20 million appropriated in FY 2009.

The date of the conference subcommittee meeting has yet to be announced.

Established in 1997, the Department of Defense’s Ovarian Cancer Research Program has received $10 million in funding annually from FY 1998 until FY 2008. However, for FY 2009, the program’s funding was doubled to $20 million. The Ovarian Cancer Research Program works to eliminate ovarian cancer by conducting innovative, multidisciplinary research on early detection, screening and treatment of ovarian cancer.

To read the full text of the letter and see if your elected officials signed, please click here.

The Ovarian Cancer Action Network periodically sends out action alerts to notify advocates of pressing issues that need constituent support. To sign up, please click here or visit http://capwiz.com/ovarian/mlm/signup.

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Qualitative Exploration of Healthcare Relationships Following Delayed Diagnosis of Ovarian Cancer and Subsequent Participation in Supportive-Expressive Group Therapy (ONS)

ctenenbaum — Tue, 10 Nov 2009 16:52:49 +0000

Published in Oncology Nursing Forum

Authors

Lauren M. Walker, MSc¹, John W. Robinson, PhD, RPsych²

¹Clinical Psychology Program, University of Calgary, Alberta, Canada
²Departments of Oncology and Clinical Psychology, University of Calgary

Abstract

Purpose/Objectives: To explore the role of supportive-expressive group therapy (SEGT) in facilitating the development and quality of healthcare relationships in patients with ovarian cancer.

Research Approach: Qualitative, grounded theory, and comparative approach.

Setting: Tertiary care cancer center.

Sample: 6 patients with advanced ovarian cancer and 3 healthcare professionals.

Methodologic Approach: Patients participated in semistructured interviews that examined the nature of their healthcare relationships, diagnoses, and SEGT experience. The primary gynecologic oncologist and two nurses responsible for the care of the patients also were interviewed. Analysis of this qualitative study employed a grounded theory technique.

Main Research Variables: Patients’ and healthcare professionals’ perceptions of healthcare relationships.

Findings: Patients’ negative diagnostic experiences were found to influence the quality of relationships with healthcare providers. However, the process appears to benefit from patient participation in SEGT. Patients perceived that SEGT helped facilitate communication between patients and professionals. Patients also indicated that SEGT led them to participate more actively in the treatment process. Professionals viewed patient participation in SEGT as a positive outlet for emotional expression, a source of psychological healing, and a tool that facilitated communication, collaboration, and understanding of medical treatment.

Conclusions: Participation in SEGT can advance communication and collaboration in medical care and provide opportunity and resources for psychological healing.

Interpretation: SEGT provides a vehicle to enhance the quality of life of patients with ovarian cancer by breaking down the common feeling of isolation, addressing women’s frustration and resentment regarding delayed diagnosis, and enhancing relationships with healthcare providers to promote collaborative care in this patient population.

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Donna Jones

bbellman — Mon, 09 Nov 2009 19:11:30 +0000

I went in for what I thought was a simple gall bladder surgery. That is when they found my cancer. Believe me, my whole world changed! I was diagnosed with stage III C and also found out I inherited a gene mutation BRCA1. I went through 6 months of chemo and intraperitoneal chemo. I have been in remission for 8 months now. I hope it stays that way for a long time to come because there are so many things I want to do in my life!! There needs to be more awareness for this type of cancer because there are symptoms and recognizing these symptoms is important in order to give women a better chance of survival.

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Team TEAL at GCF’s Race to End Women’s Cancer

gmorales — Mon, 09 Nov 2009 17:57:21 +0000

On Sunday, November 8th, 2009 the Ovarian Cancer National Alliance’s Team TEAL ran and walked in the Gynecologic Cancer Foundation’s Inaugural Race to End Women’s Cancer. Our local Partner Member organization, Rhonda’s Club, also joined us for what turned out to be a beautiful day in the nation’s capitol.

Team TEAL raised over $1,000 to help support the programs of the Ovarian Cancer National Alliance. Way to go Team TEAL!!

Team TEAL

To check out all the pictures from the race, visit our facebook page.

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