Itasca woman turns cancer frustration into help for others

When Sharon Hower was diagnosed with breast cancer four years ago, she didn’t realize there was more bad news ahead.

Yes, she knew she would have to undergo a lumpectomy, chemotherapy and radiation for the disease, which doctors caught in its early stages. But her doctor also wanted genetic testing for Hower to learn if her family was also at risk for breast cancer. The test also would determine if she were at risk for other illnesses, such as ovarian cancer.

Hower had just celebrated her 46th birthday shortly before her April diagnosis. And in her insurance company’s eyes, that made her one year too old for a $3,200 test her doctor recommended.

“The doctor said the insurance company’s rejection wasn’t a big deal and he would write a letter of medical necessity,” said Hower. “But I got another letter of denial and I didn’t understand why. I thought, ‘This is something I really feel I need to do, so how could you deny me?’”

Hower pushed her case all the way to her insurance company’s appeals board, and still was denied based primarily on her age, she said. She added that a board representative said she would be eligible for testing if one of her sisters or her niece also had breast cancer — the exact scenario she was hoping a genetic test would help thwart.

“It was an unbelievable situation,” Hower said. “I said ‘What are you going to wait for? One of my sisters to get it? For my niece to get it?’ The (board rep) said yes, but she was in tears and I was in tears.”

Daunted by the cost, Hower put the test on hold until months later, while watching ESPN with one of her three sons. The two had just seen an appearance by the daughter of former North Carolina State college basketball coach Jimmy Valvano, who died of cancer in 1993. She was on TV, trumpeting genetic testing that told her she had the same gene as her father, which made her prone to cancer.

“My son goes, ‘Isn’t that the test you’re supposed to have, Mom, but we can’t afford?” Hower said.

That spurred Hower and her husband Marty, an Itasca village trustee, to pay the $3,200 for the test themselves. To her relief, Hower did not carry any gene that indicated cancer risk. She said she was so thrilled, she wrapped her results in gift boxes and gave them to her sisters and niece at Christmastime.

By early 2009, Hower also started planning a big party to thank all her friends and family who supported her during her illness. But with ideal test results and cancer in remission, something still nagged at her.

“We were lucky enough that we can afford to pay for this, but what about the other people out there who can’t afford to know what their dealing with?,” she said.

Soon, a friend encouraged her to turn her thank-you party into a fundraiser, and an attorney friend helped her do the paperwork to create the nonprofit InGENEus Project. The program, Hower determined, would help pay for genetic testing for low-income cancer patients whose doctors recommend it.

Through a network of friends, she was connected with Dr. Pam Ganschow, an internal medicine specialist and founder of the cancer risk program at John H. Stroger Jr. Hospital of Cook County. Ganschow and genetic counselor Christina Seelaus said they decided the InGENEus Project would be used for “special cases”

“As the public hospital in Chicago, we see that population who might be uninsured or can’t afford the test for whatever reason,” Seelaus said. “There are certain methods where we can get them the testing, such as financial assistance through the lab, or Medicaid. But there are a couple that might fall through the cracks. Maybe they make a little more than what might qualify them, but they still can’t afford a $3,000 test.”

On Saturday, Hower and her family will host their fourth annual fundraiser for the InGENEus Project at the Pyramid Club in Addison. The event will feature a split-the-pot raffle, food, two free drink tickets and live music by The Mojo Daddies.

Hower said she prides herself on keeping the fundraiser low-key and casual, especially in the rough economy. So far, her approach has been a success, Hower said, since last winter the event helped raise enough money to fund two tests. In addition, it raised an extra $1,000 to supplement another patient who had some test funds, but needed extra help.

While Hower never gets to know the names of the patients — and says she doesn’t want to in order to preserve their privacy — she does get to hear their stories through her partners at Stroger. Hower said this is one reason she hopes to keep the InGENEus Project “small and personal.”

Although she does hope to build a website where supporters can send donations, Hower said she doesn’t want to grow to gala benefit status.

“I enjoy being small and personal, to keep it so we feel we are the special case group that can screen the people and help those who need it most.”

If you go

What: InGENEus Project fundraiser

When: 7:30 p.m. Saturday, Jan. 28

Where: Pyramid Club, 236 W. Lake St., Addison

Cost: $30 per person

Details: facebook.com; search ‘InGENEus Project’ under ‘groups’