Peter Hodge’s two daughters fight cystic fibrosis daily, their medications, doctor visits and hospitalizations costing about $1 million in health care benefits a year. Should the Republican-controlled Senate upend insurance similarly to what the House of Representatives has already approved, their lives could be jeopardized, he said.
Hodge worries that his older daughter could end up on a newly defined Medicaid, with spending and other limits determined by the states. His younger daughter could face lifetime caps on the amount his insurance plan would pay for her treatment.
"People with cystic fibrosis and their families are terrified, absolutely terrified," said Hodge, who works in technology in South Florida.
Congressional attempts to revamp the health care system have been overshadowed by the drama centered on the White House: the Russian meddling in the U.S. presidential election, President Donald Trump's firing of FBI Director James Comey and the appointment of a former FBI director, Robert Mueller, as a special counsel. But even as some political analysts say Trump's problems threaten the GOP legislative agenda, senators have begun discussing health care.
And as they do, people across the country are trying to make sense of what Republican efforts to repeal and replace Obamacare will mean for them and those with pre-existing conditions are particularly anxious.
The House-approved American Health Care Act dismantles many of Obamacare's provisions, which has resulted in an additional 20 million people receiving insurance. It allows insurers to reinstate caps on lifetime coverage, loosens protections for people with pre-existing medical conditions, rolls back state expansions of Medicaid and slashes more than $800 billion from the joint state-federal program over 10 years as it moves from an open-ended federal guarantee to one that gives states control over how to spend a set amount. The Medicaid cuts would affect about 10 million people, according to an estimate from the Congressional Budget Office.
Trump's $4.1 trillion budget proposal for 2018, released on Tuesday, includes $600 billion in decreases to Medicaid, apparently on top of the House cuts. Medicaid provides health care not only to the poor, but also to elderly and disabled Americans, who account for 60 percent of the cost.
The House vote was taken before the nonpartisan Congressional Budget Office analyzed the effects of the revised legislation. Its report on an earlier version found it would shrink the federal budget deficit significantly but leave 24 more million Americans without insurance in 2026.
The new analysis, released on May 24, projects 23 million people without insurance over the next decade and says the federal deficit would be reduced by $119 billion, down slightly from $150 billion.
It estimates that low-income 64-year-olds could face premium spikes of 800 percent or more in 2026 compared to premiums now, while premiums for young adults would be reduced substantially.
Costs for people who have pre-existing conditions or who are sick would soar in states that take waivers, the report said.
Republicans have been pledging to repeal and replace the Affordable Care Act since it was signed by former President Obama in 2010. Some have philosophical disagreements over what role government should play in health care, others want to repeal taxes it imposed on the wealthy or argue that too many insurers are pulling out of the marketplaces. Trump has repeatedly insisted Obamacare is collapsing, a characterization disputed by his critics, who blame Republicans for the uncertainty facing insurers.
The House waited for the new report before forwarding the bill to the Senate, which is expected to make major changes now negotiations begin in earnest. Some senators are trying to work across party lines, but conservatives remain committed to more radical changes, and a group of Republicans picked by the party leadership has been meeting in private, with no plans for public committee hearings.
"Your morning reminder that under the cloud cover of the FBI story, 13 GOP Senators are still secretly writing a bill to destroy the ACA," Democratic Sen. Chris Murphy of Connecticut tweeted on May 15 as news organizations focused on Comey’s firing.
In an interview on May 24 with Reuters, U.S. Senate Majority Leader Mitch McConnell declined to provide a timetable for a draft of a health-care bill and said he did not know how Republicans would get the 50 votes needed for passage.
"But that's the goal," he said.
The changes already approved by the House would be devastating to twin sisters Anastasia and Alba Somoza of New York City, particularly any decreases in Medicaid, according their mother, Mary Somoza.
The twins, now 33, were born prematurely with cerebral palsy, and though unable sit up on their own, Alba Somoza works as an artist who teaches children in New York City and Anastasia Somoza as an advocate for others with disabilities. She also spoke on behalf of Hillary Clinton at the Democratic National Conventional last summer, when she said she feared Trump’s election.
Everything they have accomplished could be at risk, Mary Somoza said.
"They will require from-womb-to-tomb assistance," she said. "And I'm not always going to be around to provide it."
In 2004, the Centers for Disease Control estimated that the lifetime cost to care for a person with cerebral palsy at $1 million. Both women need extensive assistance from aides to live as independently as they do, and Alba Somoza, who cannot speak, communicates through a $10,000 computer that must be updated every five years. However progressive New York is as a state, it cannot cover the costs that the federal government does, Mary Somoza said.
"They both do extraordinary things and all of that would come to a halt if anything happened to their Medicaid coverage," she said.
United Cerebral Palsy, which advocates for independent lives for those with cerebral palsy, fought the House bill, calling it potentially devastating to anyone who relies on Medicaid for health coverage and longterm services.
"We are hopeful that as the Senate deliberates, more information about the projected impact of the House bill will become known and that the Senate will not pass a bill that would bring harm to our community," it said in a statement.
It is among the major health organizations that have take positions against the House bill, including the American Medical Association, the American Hospital Association, the American Academy of Family Physicians, and the American Academy of Pediatrics. Even the chief medical officer of Medicaid, Dr. Andrey Ostrovsky, tweeted his opposition in March.
"Despite political messaging from others at HHS, I align with the experts from @aafp @AmerAcadPeds @AmerMedicalAssn in opposition to #AHCA," he tweeted.
According to a Quinnipiac University poll released on May 11, 56 percent of American voters disapprove of the plan passed narrowly at the beginning of the month by House Republicans under Speaker Paul Ryan.
Norma Brockman, the director of a pre-school in New York City, has already had one of her knees and a hip replaced, but needs the same operation for her other hip.
Brockman is insured through her job, plus she bought supplemental coverage, but fears that what had cost her $500 would no longer be covered and be more than she could afford, she said. The cost of a hip replacement in New York City can be as high as $69,654, according to a 2015 report done by Blue Cross, Blue Shield.
"I will be in a wheelchair for the rest of my life if this happens," she said.
The changes approved by the House would allow states to waive the requirement that insurers not penalize people with pre-existing conditions, provided they have had a lapse in coverage. High-risk insurance pools would be available but critics say they are often under-funded. Six million Americans with pre-existing conditions could face significant premium increases, according to an analysis done by the Kaiser Family Foundation.
"We cannot afford to let people die," Brockman said. "We cannot afford to let people be sick. I don't understand how they look us in the eye and say, 'Oh you have choice.' If you can't afford it, you just don't have it."
Delilah Talbot, a mother from Kearny, New Jersey, was covered by a corporate insurance plan when she was diagnosed with what was thought a very early stage of breast cancer. But various rounds of testing revealed that the then 32-year-old actually had advanced breast cancer that had already moved into her lymph nodes and one of her hips. Talbot's treatment — surgery, chemotherapy and radiation — was covered by her plan and whenever her insurance company balked, her doctor was able to petition successfully, she said.
"I had a very experienced oncologist who understood the nature of breast cancer at a young age," she said. "As he calls it, it's a vicious monster and it really doesn't let up."
She went into remission for two-and-a-half years. Early last year her cancer returned, this time as lesions in her spine. For six months she was able to keep the tumors from spreading through medication but by December she was in too much pain, and now her chemotherapy is so debilitating, she is often not able to leave her home. She is fighting for her life for her son, she said, who lives with his father.
"Everything that I do is for him," she said. "Every bit of work that I did, every penny that I earned was to provide a life for him."
This time, she is insured through Obamacare, with premium costs of just under $600 a month, which she offsets with a $300 credit. She is eligible for Medicare, but out-of-pocket costs would be higher. Were the Republican changes to take effect, she would not be able to get insurance she could afford and the treatments she needs, she said.
"I believe people creating these policies have no absolutely idea how it affects your life from A to Z — not just from the point of your health and your physical health and how you have to treat that but your mental health and your finances and trying to recover from that and possibly having to file for bankruptcy," she said.
Hodge's daughters, now 24 and 16, are insured through his employer but he is apprehensive about lifetime caps, which he said his daughters' drugs alone could exhaust in a year or two. Equally worrying to him are the cuts to Medicaid, through which half of children with cystic fibrosis and a third of adults receive care.
Hodge's eldest daughter will turn 26 in two years and will no longer be eligible for coverage under his insurance. If she is assigned a high-risk pool, there is little likelihood that she will be able to get affordable, adequate treatments, he said. Or if she finds herself on Medicaid, she will be at risk if her treatments are restricted.
"The American Health Care Act is woefully inadequate for people with cystic fibrosis," said Mary Dwight, senior vice president for policy and patient assistance programs at the Cystic Fibrosis Foundation. "To be clear, the legislation does not protect people with pre-existing conditions. In fact, it undermines vital safeguards against being charged more for insurance based on health status."
Currently, Hodge's daughters receive care at centers that offer multidisciplinary teams, an approach that has been successful for people with cystic fibrosis. It helps to keep them out of hospitals and emergency rooms, where they can be exposed to bacterial infections that will do further damage to their lungs, he said. Kalydeco, a drug that both daughters take, and which has allowed his elder daughter to live and work in Washington, D.C., costs more than $300,000 a year. Copay programs could be in jeopardy, he said.
"There is absolute potential in there for the protections that we have for existing conditions to go away," he said. "As much as Paul Ryan wants to stand up and say that isn't the case, he should read his own bill."