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JERREY ROBERTS

Betsy Neisner, seen here in July at the Cancer Connection in Northampton where she is executive director, says she is stepping up her efforts to focus attention on the shortages of chemotherapy drugs.

NORTHAMPTON - With the future of her own treatment for ovarian cancer in doubt, a Leverett woman is stepping up her efforts to find solutions for the persistent shortages of chemotherapy drugs.

In a letter she sent in December to about 225 friends, family members, and fellow cancer survivors, Betsy Neisner, who is the executive director of Cancer Connection in Northampton, wrote that she felt "compelled" to take action by launching a grassroots effort.

"I finally got my act together to raise a ruckus about the drug shortages," Neisner, 58, told the Gazette.

"There are two ways to have change," Neisner said this week. "One is be quiet and to take change as it happens." She has opted, she said, to be "a catalyst" for urging Congress and the drug companies "move faster to find solutions."

She has to date exchanged two sets of letters with Sen. John Kerry, D-Massachusetts, Neisner said, opening a dialogue.

Contacted by the Gazette Thursday, Kerry said by email that his wife's and his own experiences as cancer patients have sensitized him to the shortages.

"I know that when someone you love has cancer, you'll do anything to get them a fighting chance. Drug shortages, stockpiling, and price gouging drive families crazy, especially among patients with few medical alternatives," Kerry said. He cited President Obama's recent executive order requiring manufacturers to provide advance notice of possible shortages as a good first step.

Beyond that, Kerry said he will continue "ringing the alarm bells" at the Food and Drug Administration. "The FDA has to speed up the way they review new drug suppliers, manufacturers and methodologies," he said. "A lot of us care about this in the Senate."

Closer to home, Tom Mitchell, an aide to State Sen. Stanley Rosenberg, D-Amherst, told the Gazette: "we're researching the issue," in response to Neisner's letter. The shortages will have to be dealt with at the federal level, Mitchell said, but "we are encouraging our delegation to pay attention."

The shortages - which involve many drugs used for a variety of purposes - have affected hospitals around the country, according to a survey done last summer by the American Hospital Association. Over the past year, the issue started attracting increased attention from lawmakers in Washington and from the media when the shortages began affecting cancer patients who were fighting for their lives. About 550,000 cancer patients have been affected, according to a November 2011 report by the IMS Institute for Healthcare Informatics.

Reasons for the problems vary from drug to drug, but some include a lack of manufacturing capacity making it difficult to meet demand and a several-year wait for new facilities to come online; limited government resources to inspect plants and approve those in other countries; and safety and quality concerns that can take months to resolve.

Neisner, a lawyer by training, has collected and prepared information about the multiple causes of the shortages that are affecting patients and hospitals around the country and some of the solutions under discussion. She has compiled a list of articles about the shortages, drawn from medical journals, newspapers and magazines. She has also written to state and federal lawmakers, asking for their views on the issue and urging them to get involved in the search for solutions. She hopes that others will write to their legislators and to pharmaceuticial executives as well, she said.

Neisner said she wants to share the materials she has collected with others who want to know more about the issue or who might be interested in taking steps of their own, such as contacting their legislators. She has set up the following email address for her effort - drug.shortage.action@gmail.com - and will send requested materials to anyone who contacts her at that address, she said.

"It does take time to do this," Neisner said. Her goal was to collect information that would "explore all sides" of what is a very complicated issue, she said, not to simply offer "a knee-jerk" reaction to a difficult situation.

Her advocacy work on the drug shortage issue is separate from her responsibilities at Cancer Connection, Neisner said. Cancer Connection is a non-profit organization that provides programs and services to cancer patients and their families. Neisner, who became director there in 2008, has also served as a consumer advocate on government panels that review applications to fund ovarian cancer research.

Neisner was diagnosed with ovarian cancer in 2002 and is being treated at Massachusetts General Hospital in Boston.

Last July, when she went in for a scheduled chemo treatment, Neisner was told the hospital did not have enough Doxil, which she had been receiving since April 2010, on hand for her treatment.

In an effort to find out when Doxil would be on the market again, Neisner began making calls last summer to the company that manufactures it, Ben Venue Laboratories of Ohio, which makes it for Janssen Pharmaceutical Companies of Pennsylvania, a division of Johnson & Johnson.

At that time, she said she was told that the holdup was because of problems noted by government inspectors.

Neisner was treated with an alternative, drug that resulted in seven weeks of nausea, she said.

When Doxil became available again, her treatments with it resumed early last fall. Neisner said she is scheduled for two more Doxil treatments, but that after that, there will be no more.

In late December, a statement from Janssen's president said that the company was "deeply disappointed" to announce that Doxil would likely not be available until the end of 2012 "at the earliest."

She and her doctors haven't decided on a course of action, Neisner said. She could be put on another drug, she said, enrolled in a clinical trial, or take the risk of a break from chemo to see how she does, she said.

"I'm not going to think about it until I'm done with the Doxil," she said. Right now, she said she was fortunate to be feeling good. "I really think I'm doing fabulously well," she said.

Suzanne Wilson can be reached at swilson@gazettenet.com.