SIKESTON — Julie Heppe said her 12-year-old nephew once asked "Why does Aunt Julie live forever with cancer, while everyone else seems to die from it?" And since Dec. 16, the rural Sikeston resident said she's learned what her mission in life is — to fight a decision the Food and Drug Administration made.
Diagnosed with breast cancer in 1993, she has battled the disease as it's come back four times. The last time the cancer reappeared — in 2005 — it had reached the lining of the lungs and was classified as Stage 4.
For the past two years, Heppe has taken the drug Avastin to help halt her cancer. For the past six months or so, there have been rumblings the FDA would take it off the market for Stage 4 breast cancer patients such as herself.
And that happened on Dec. 16. Heppe said she woke up from a nap to hear the news on TV.
"I heard two words — FDA and Avastin," she said. After she rewound the program, Heppe learned that the FDA had recommended to no longer provide the treatment as an option for those with Stage 4 breast cancer because of side effects experienced by some patients.
"I was very angry," Heppe recalled. "I've never been a person to follow politics, but I am now. I knew that changes were coming, but I never thought it would start with my own medicine."
So now, she's made it her mission to fight the decision. "I want to bring awareness to what the FDA and government can do to limit our resources," she said.
One of Heppe's first moves was to set up a blog.
In the online diary, she posts her feelings about the decision, how Avastin has helped her and updates with any news.
Every day, Heppe said she scours the Internet for any updates regarding Avastin. She's stumbled across many forums for breast cancer patients, too.
"I see women who are just as angry as I am," she said.
Heppe said she has also been e-mailing members of Congress to give her side on why the drug should continue to be provided for herself and others afflicted with Stage 4 breast cancer. She plans to send out hard copies soon, and a friend will make a video, which will be sent out as well.
Since the FDA's Dec. 16 ruling, the drug company that manufactures Avastin has filed an appeal. Hearings will take place, then both branches of Congress will have to vote whether to approve the withdrawal.
If that takes place, generic forms of the drug will be available for breast cancer patients — it just won't be covered by any government health care. So patients will be able to pay for the treatment out of pocket — but that will cost $60,000 to $100,000 annually, according to Heppe.
"So only the wealthy would be able to afford it," she said. "My personal opinion is that this would be a first step toward government control and rationing drugs. But at what point do we put a price tag on our quality of life?"
If Congress does support the FDA's decision, "this will kind of be a first step in pulling back an effective drug. It would be a huge step backward for cancer research."
Heppe said she probably would not be alive today without Avastin and that if the treatment is no longer available she has no idea if she'll still be alive in a year. "And if I am, I'll be on chemo or some other type of treatment that isn't as effective," she said.
When Heppe's cancer came back in 2005, she explained that she had weekly chemotherapy treatments.
"But I was in bed four days a week with fever and my cancer wasn't responding well," she said. So, Heppe stopped chemo.
Shortly after, her main physician, Vincent Vallero, an oncologist at MD Anderson in Houston, Texas, told Heppe about Avastin. This was a new treatment that had been recently approved for the use in advanced breast cancer cases such as her own.
Heppe said she was excited to try the new drug.
"It works differently than chemotherapy," she said. While chemo targets an area to destroy all the cells, Avastin inhibits angiogenesis, which means it stops the capillary growth to tumors.
"It doesn't take them away, but it no longer feeds them," said Heppe. "We can live with tumors but not their out-of-control growth."
Her husband, Dewey Heppe, agreed. He recalled that when his wife was diagnosed with Stage 4, they were wondering what treatments would be available. When they first heard about Avastin "it seemed like it was just a miracle drug."
Heppe now has two-hour treatments every two weeks at Missouri Delta Medical Center's Infusion Center. Heppe also sees Vallero every six to nine months for protocol and diagnosis.
Heppe said she realizes that there are side effects to Avastin, just like any drug. As a result, she has high blood pressure, for which she takes medicine.
"But I have a quality of life now that I didn't have before," she said. "Right now, you would never know that I have cancer."
Her husband said the family is afraid about what treatment will be available if Avastin is no longer offered.
"It's really mind-blowing when you sit down and think about it," he said. "It's a drug that actually works for a particular group of people, but they're saying no, you can't have that drug. I really don't comprehend how some people in our government can be the ones to decide that."
The FDA, Heppe said, says money is not an issue with its decision. "They say the Avastin has not shown to prolong a woman's life long enough to justify the side effects that come with it," she said. "According to them, the side effects outweigh the quality of life.
"But who are they to say just how long a person will live?"
Heppe also said that it's hard to justify what the quality of life is.
"Once someone has Stage 4 cancer, there is no cure. But this drug not only gives people with that diagnosis the feeling that they don't have cancer, it gives us a couple months of quality life — what we consider a miracle drug," said Heppe. "We don't look at the side effects at that point."
She acknowledged that Avastin has been lethal for some. "But with every drug, there are severe risks that we are willing to take in exchange for life," she said. "I am living with cancer, due to this drug."