IMF Advocates Make a Difference in Connecticut

by Meghan Buzby, Advocacy Assistant

Michael Tuohy, 10-year myeloma survivor, and his wife Robin, Director of Support Groups for the IMF, testified in support of SB 50, a bill that would require private insurance companies to cover oral anti-cancer drugs at the same rate they cover intravenous infusions in terms of patient out of pocket costs, before the Connecticut Senate Insurance and Real Estate Committee.

"Testifying at the state level at a hearing was new to us," said Robin."We weren't quite sure what to expect of the process, but the IMF gave us guidance and support so it turned out to be easier than we expected."

The Tuohys met with their own state representative, Representative Rose DeLauro, who prepped them on what to expect before going into the hearing and reminded them that data is important when giving testimony. In addition to other, more general materials from our Advocacy Toolkit, the IMF team provided Michael and Robin with a report from Vermont that included relevant statistical information that could be referenced during the hearing. Representative DeLauro also made a point to remind them that more than three thousand bills cross her desk every session and, in order for her to be an effective legislator, she relies on her constituents to keep her informed of all important legislation so that she can consider co-sponsorship of bills that would improve their lives.

Both Michael and Robin each had only three minutes to testify so they used the time wisely. Michael spoke as a myeloma patient, a 10-year survivor, and on behalf of support group members in Connecticut, while Robin spoke on behalf of the IMF.

"I shared my experiences as well as difficult situations faced by other patients specifically dealing with insurance reimbursement issues," Michael explained."I wanted them to understand that a lot of insurance policies require higher out-of-pocket expenditures for oral drugs as opposed to treatment administered intravenously at the doctor's office. This means that many patients have had to forego getting the drug that's optimal for their treatment, or they've had to go into debt to meet the co-payments required."

One such story is of a woman who was newly diagnosed. Her doctor recommended an oral therapy as her best treatment option. She is in remission, but had to sell her house and is now living with her daughter so she can afford the co-pay for the oral therapy that is saving her life.

Michael told the committee that over the last 10 years he has seen many exciting novel therapies approved to help patients including him, live longer, more productive and active lives. He wanted to help his legislators understand that the laws have not kept up with the innovation, and it needs to change.

Robin spoke as a representative from the IMF and drove home the points that Michael had already made about the need for an equitable, patient-oriented insurance system that acknowledges and covers today's tests and treatments, and the fact that an unexpected and unwanted side effect of a drug can be economic—based upon inequitable and irrational differences in reimbursement.

Michael shared, "The feeling we got from testifying definitely got our adrenaline going and it was a very effective way for us to keep the public and the legislators informed."

"We absolutely think what we are doing makes a difference," agreed Robin.

Since the Tuohys testimony, the IMF, Connecticut residents, and the myeloma community are proud to say that SB 50 was signed into law! Congratulations and thank you to Michael and Robin who played an integral role in this process!