Top Health Groups Not Consulted for Republican Health Care Bill

The American Health Care Act, which passed in the House, is now in the hands of 52 senators. But the Senate decided to bypass the normal legislative process of hearings, testimony from experts and debate in an effort to garner the 50 votes needed to pass it. That isn’t sitting well with many Republican senators, who have been frustrated over the closed and secretive process that’s being handled by a tight group of 13 of their colleagues.

Health experts, too, say they played almost no part in the creation of this health care bill—a drastic departure from the past. TIME polled a group of major health organizations and asked how much input they have had in the creation of the AHCA.

The American Heart Association (AHA)

“We’ve had meetings for the sake of having meetings,” says Sue Nelson, vice president of federal advocacy. “I don’t feel like the meetings I’ve been to on this legislation have been productive working sessions. We say, ‘This is what we think is important,’ and they say, ‘Thank you.’”

Nelson says the AHA’s experience was very different when helping to create the Affordable Care Act under President Obama. When she worked with Congress then, she recalls saying that coverage for people up to age 26 was critical, since children born with heart defects need medical care through that time. While lawmakers balked at first, it was ultimately included as part of Affordable Care Act. “People were listening and cared what you said,” she says. But Nelson says there has been little feedback on the comments the AHA sent on the House version of the bill. “Now I feel like we are not really having a conversation.”

American Psychological Association and American Psychiatric Association (APA)

“We have had almost no reach-out to us at all,” says Doug Walter, assistant executive director of government relations for practice organization with the American Psychological Association. The only request came from Sen. Orrin Hatch in May, Walter says, who as chairman of the senate finance committee asked the APA for input. But without a draft of the Senate bill, he says “we basically had to react and say ‘Don’t pass something like the House bill. It’s hard to provide input when there is nothing to work from.”

Their biggest concern is what will happen to mental health benefits that the organizations fought for and were successful in getting as part of essential benefits under the Affordable Care Act. That meant that insurers had to include coverage of mental illness and behavioral issues as part of basic coverage. The loss of Medicaid coverage for mental illness is also concerning; about 25% of all mental health coverage is provided by Medicaid, says Walter.

“No one has requested our feedback on the AHCA, either prior to its release or after,” Dr. Saul Levin, CEO and medical director at the American Psychiatric Association, wrote in an email response to TIME. “Any proposed legislation that affects so many Americans needs to be worked in public, not behind closed doors.”

American Cancer Society Cancer Action Network

“It’s a really extraordinarily unusual situation how closed this process is,” says Dick Woodruff, senior vice president for federal advocacy at the American Cancer Society Cancer Action Network. Years before ACA became a bill, he remembers senators holding roundtables with health care groups, patient groups, Hill staff, pharmaceutical industry representatives, employer and employee groups and anyone else who had an interest in health care reform. “I’ve spent my entire career working on the Hill and don’t ever remember a bill being this closed,” he says.

What worries cancer advocates is the elimination of mandated coverage under ACA for pre-existing conditions. “I don’t think most senators realize that there are 15 million cancer survivors living today, each of whom would be considered as having a pre-existing condition and would be excluded from insurance coverage,” says Woodruff. “The absolutely worst thing the House bill provision does is enable states to waive rules requiring states to sell insurance to people with pre-existing conditions. It would bring back underwriting on the basis of health status.”

The proposed cuts to Medicaid would also drastically affect the 2.3 million cancer patients who currently rely on Medicaid for life-saving treatments. “I don’t think [the senators] have any idea how important Medicaid is to not just cancer patients, but to people who need basic preventive public health care,” he says.

While cancer groups can get meetings with Congressional staff, “even the senior staff is really not part of the process,” he says. “The Senate process is being held so close to the vest by just a few senators and staff that it doesn’t matter if you go up and talk to staff, because they don’t know what is going on.”

American Academy of Pediatrics

About 37 million children in the U.S. rely on Medicaid, and the nearly $900 billion in cuts to the program proposed in the House bill would have lasting effects on the country, says Mark Del Monte, chief deputy and senior vice president of advocacy and external affairs at the AAP. “The proposed cuts to Medicaid kick the legs out from under a program that is central to the health of 37 million children,” he says.

As with other groups, Del Monte says the AAP has not been a major contributor to the Republican bill. “We had no meaningful opportunity to talk to House leadership, Senate leadership, or committees of jurisdiction,” he says. “The expertise of the AAP and its members have not been requested in this process.”

The proposed cuts to Medicaid could adversely affect the health of the country in coming years, he says. “When children have health insurance of any kind—public or private—we know they miss fewer school days due to illness and injury,” Del Monte says. “They do better in school and are more likely to graduate from high school and attend college. They have a healthier adulthood, earn higher wages and pay more in taxes. For every reason, assuring that every child in the U.S. has high-quality healthcare from prenatal care through young adulthood makes sense not just for the individual child, but for the country. It’s the best investment we can make.”