Jodi Lemacks spoke Monday at the “Protect Patients Now” event on Capitol Hill alongside, from left, her son Joshua, Sen. Bob Casey and other advocates.

Jodi Lemacks spoke Monday at the “Protect Patients Now” event on Capitol Hill alongside, from left, her son Joshua, Sen. Bob Casey and other advocates.

Dozens of patients and advocacy groups including the American Heart Association gathered on Capitol Hill on Monday to demand a stop to a proposed bill that would repeal and replace the Affordable Care Act.

Wearing red T-shirts with the phrase “I Am A Pre-Existing Condition,” patients spoke at a “Protect Patients Now” event and urged senators to reject the proposed Graham-Cassidy health bill. The bill would eliminate critical protections for heart and stroke patients and others with pre-existing conditions, and make drastic cuts to Medicaid.

“I want our lawmakers to know that if Graham-Cassidy passes, they will be putting the life of my son in serious jeopardy, along with the lives of the 40,000 babies who are born each year with heart defects,” said Jodi Lemacks, whose now-14-year-old son, Joshua, was born with a congenital heart defect.

“To watch your baby have open-heart surgery and struggle to survive can almost shatter you – but it would be even more unbearable if you couldn’t afford to give your child the care they needed to live,” said Lemacks, who lives in Virginia and has been a volunteer for the American Heart Association for over a decade.

The Graham-Cassidy bill is the latest attempt by Republican lawmakers to repeal the 2010 Affordable Care Act, commonly known as “Obamacare.” The bill – named after two of its sponsors, Lindsey Graham (R-South Carolina) and Bill Cassidy (R-Louisiana) – would give states broad power to decide how to run their health-insurance markets, including the ability to erase Obamacare’s protections for those with pre-existing conditions.

Sen. Bob Casey (D-Pennsylvania) called Graham-Cassidy “a snake in the grass” that is moving quietly but steadily through Washington. Senators Rand Paul (R-Kentucky) and John McCain (R-Arizona) are among Republican senators who have publicly opposed the bill, which is expected to be voted on this week in the Senate.

The American Heart Association, which advocated for the passage of Obamacare in 2010, was part of a coalition of 22 patient and public interest groups who organized the press event. Others include the American Cancer Society Cancer Action Network, American Lung Association and the National Multiple Sclerosis Society.

“Our ultimate goal has been and will continue to be to work constructively in a bipartisan manner to build on and improve the current health care law,” said Sue Nelson, Vice President of Federal Advocacy for the AHA. She said the Graham-Cassidy health bill “falls far short” of acceptable standards.

“This legislation would reduce the number of people with insurance coverage by around 21 million between 2020 and 2026. That’s simply a deal breaker,” Nelson said. “And make no mistake – American lives will be lost if this legislation is enacted into law.”

Steve Taylor, a patient from Alaska, said the Graham-Cassidy bill could spell the end to the monthly injections he receives to treat his pancreatic cancer. The injections cost $10,000 each, and the proposed legislation could allow insurance plans to refuse coverage, he said.

“We shouldn’t have to worry whether we can afford a shot that will keep us alive,” Taylor said. “We need practical, bipartisan efforts to fix what’s wrong and add people to coverage, not take people away from coverage. Let’s not make this into a political game. It’s not politics – it’s our lives.”

Ashley Murosky of Wayne, Pennsylvania, was a sophomore in college when she was diagnosed with a rare, genetic form of lung cancer. Now 24, she said she’s been through multiples surgeries and radiation and is now “consumed by the fear of what can happen to me if the Graham-Cassidy bill becomes a law.”

“In 2015, when I purchased my own health insurance, I was not penalized or charged more because of my pre-existing condition. With this Graham-Cassidy bill, I could be,” Murosky said. “Our health care system isn’t perfect, but just taking it all away from people like me who need it would be devastating.”

In May, late-night comedian Jimmy Kimmel focused the spotlight on health care legislation when he told viewers about his son, Billy, who was born with a congenital heart defect. Since then, he’s become an outspoken opponent for legislation that repeals and replaces Obamacare.

“As Jimmy Kimmel pointed out, most Americans aren’t as lucky as he is when it comes to being able to afford the best medical care,” said Lemacks, the mother who spoke at the press event. “We desperately need the protections provided by the Affordable Care Act. Please don’t take them away.”

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