Out in the Lobby

Millions in the cancer community are working to increase research funding or change policy.
“Right now, drug companies have strong incentives to exclude children. Biological differences between children and adults might skew trial results and jeopardize approvals. A child might suffer some terrible side effect and make national news,” Agin says. “Unfortunately, adults-only trials produce adults-only approvals for virtually all new cancer drugs.”

Although some new drugs have been approved recently for the treatment of pediatric cancers, Agin says, “Children often still receive the same treatments they got 30 years ago and have no access to medications that might work better. We need to give drug companies the ability to sign children up for trials without penalizing them if the medications don’t work on children.”

A legislative victory for advocates in the cancer community, no matter what their individual interests, was the passage of the Affordable Care Act. The new law includes a number of features that ACS CAN has long advocated, especially the safeguards that help people with pre-existing conditions to get affordable insurance coverage for both standard treatments and clinical trial care.

With that victory won, ACS CAN is starting a major push to increase palliative care, a term that’s often associated solely with end-of-life pain management but actually encompasses a wide range of coordinated medical support services from psychotherapy to physical therapy.

ACS CAN has already lent its support to three palliative care bills that have been introduced in Congress. Those bills appear unlikely to pass this term, but the group will keep working to build support.

“We think it’s a big opportunity for everyone, and we plan to push on both the legislative front and within government agencies that can encourage palliative care by doing things like creating payment codes for (medical discussions) that happen over the phone or over the Internet rather than face to face,” says Woodruff, of ACS CAN.

An Exhaustive Effort

Advocates for those with cancer, be they one-man operations like Agin or million-man operations like ACS CAN, represent just a fraction of the many special interests that try to influence federal health care policy. Other groups lobby on behalf of doctors, hospitals, insurers, employers and many other constituencies.

The expenditures of these other lobbies dwarf those of cancer policy advocates. Indeed, the pharmaceutical industry spent nearly $230 million on its lobbying efforts in 2013 alone. The insurance industry spent more than $150 million, hospitals more than $90 million and health care professionals more than $85 million.

The agendas of a given group may align with those of the cancer lobby on issues such as research funding, yet clash over others -- for instance, how many costs payers should pass on to patients.

The sheer number of players and issues make it hard to generalize about allies and opponents. Organizations that agree on some points are almost certain to disagree on others.

While volunteers within the cancer community may have different individual missions, too, they tend to have one thing in common: They work tirelessly. They present their cases as many times as they can, in as many ways as they can, in as many venues as they can. It is a labor-intensive operation, but the enormous supply of volunteers makes it possible.

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