- Associated Press - Monday, May 8, 2017

KITTERY, Maine (AP) - Sabrina Velandry was just trying to make an appointment to make sure her daughter Luna would receive life-saving shots needed to recover from open-heart surgeries she had to undergo as an infant.

Luna required respiratory syncytial virus shots for the sickness that affects young children and infants who have heart and lung trouble. Treatment required the shots from age 2 months to 24 months.

Velandry said her out-of-pocket costs kept rising to more than $3,000 per shot, per month, while her then-husband’s health insurance plan was covering less of the price because the shots are indexed to the baby’s weight as Luna grew. She said the shots needed to be administered within three days of arrival. Then, she had to clear the appointment with her insurer, which Velandry said could take a whole morning and deprive her of the opportunity to work on a given day.

“I get the shot set up and I drive the baby and her toddler sister all the way to her special pediatric doctor in Dover, and they never sent the shot,” Velandry said. “I went to buy a coffee afterward and found that my account had been swept by the insurance company to pay for the shot but they didn’t deliver it.

“The cost of these shots wiped us out. We were combined low six-figure earners and college educated. They’ve really tapped into the anxiety of a mother, who is trying to do the best for her child.”

According to Velandry, Luna’s heart defects were discovered when Velandry went in for a routine ultrasound when she was 22 weeks pregnant. Luna was born with dextrocardia, a condition in which her heart was on her right side, instead of her left, and transposition of the greater arteries, meaning her heart was essentially flipped and her aorta flowed upside down toward her head. Because of pulmonary atresia, her pulmonary arteries were shrunken and she suffered pulmonary stenosis, which is the lack of a major artery.

“The technician was looking, looking, looking and then all of a sudden she said we need to get a better look at the heart, and I wasn’t thinking much of it at the time, which I know now is the code for something being wrong,” Velandry said. “So they send me across the street to the hospital and the next technician said he typically didn’t work with fetuses but he could tell me just from being an ultrasound technician that my baby was deformed. When someone tells you your baby is going to be deformed you feel like you’re in this out-of-body experience and he told me that she basically had half a heart.”

Luna, now 9 years old, has since made a full recovery for all intents and purposes. She loves to write, create art. She’s bright, having tested into Kittery schools’ gifted and talented program, and has a brilliant sense of humor, said her mom. Her favorite books are the “Series of Unfortunate Events” novels. Luna also volunteers for her school’s Green Team and is routinely seen putting on latex gloves to make sure all the compost, trash and recyclables are properly sorted, Velandry said.

Just looking at her, no one would realize she endured three open-heart surgeries before she was 2. But her mother fears Luna will not be able to obtain health insurance in the future in the event the Affordable Care Act is repealed.

Luna and 131 million non-elderly Americans with a pre-existing health condition from diabetes, cancer, heart defects, auto-immune diseases like Lupus, among many others, face uncertainty if the ACA is repealed, according to the Department of Health and Human Services.

The House of Representatives on Thursday approved the GOP’s health care plan, the American Health Care Act (AHCA), which passed by a vote of 217-213 - with 20 GOP defections and zero support from Democrats. Analysts have suggested the bill will weaken protections for people with pre-existing conditions.

The bill includes amendments such as the MacArthur Amendment, which would set up “high-risk” pools to help states reimburse insurers for covering sicker patients by entering a federal risk-sharing program, according to Politifact. The pools would be in place to allow health providers to determine how likely an individual is to need care based on past health history, which could lead to higher costs to individuals with pre-existing conditions, according to Politifact.

The bill faces an uphill battle in the Senate, which is also controlled by Republicans, but several of its GOP members have expressed disagreement with the House bill.

Sen. Susan Collins, R-Maine, said the House bill presents “more questions than answers about its consequences.” She said there should be “no barrier for coverage” for people with pre-existing medical conditions and that the House’s tax credits “do not adequately take into account income levels” or regional differences in health costs.

Sen. John Thune, R-South Dakota is working on a plan to skew the bill’s tax subsidies more toward lower-income people.

“The Senate will now finish work on our bill, but will take the time to get it right,” said Sen. Lamar Alexander, R-Tenn., who chairs the Senate health committee.

The plight of individuals with pre-existing conditions was in the national spotlight after Monday night when late-night host Jimmy Kimmel made an emotional plea by sharing the story of the birth of his son, William on April 21, during his opening monologue.

William was discovered to have one of the heart defects Luna also had, which required open-heart surgery just days after he was born.

“It’s terrifying, my wife was back in the recovery room and she doesn’t know what’s going on and I’m standing in the middle of a lot of worried looking people, who are trying to figure out what’s going on,” Kimmel said choking up. “No parent should ever have to decide whether they can afford to save their child’s life. It just shouldn’t happen. Not here.”

In the event the ACA is repealed, Democratic lawmakers fear a Republican health care plan would not afford the same protections and throw more than 20 million Americans off their health care coverage after a separate bill will be written in the Senate, according to media reports.

Democratic Rep. Chellie Pingree of Maine’s First Congressional District said the bill, if made into law, would negatively affect the more than 20 million people who have obtained health insurance through the ACA.

“What’s clear is that this legislation would have devastating impacts on my constituents,” Pingree said. “In dropping 24 million people from their insurance coverage and jacking up premiums for older Mainers, the original version of this bill was already terrible. But (Republicans have) managed to make it much, much worse by now stripping away coverage for essential health benefits and protections for pre-existing conditions, which the public overwhelmingly supports.

“I’m appalled that Republican leaders are ramming it through without listening to constituents or waiting for a (Congressional Budget Office) score that would outline the havoc it will wreak on people’s lives,” Pingree said.

According to the news site Vox, there is also a stipulation in the AHCA that would allow Republican lawmakers and their staffs keep ACA protections, but Rep. Tom MacArther, R-N.J., said he would work to close the loophole, but conceded to Vox it would be closed through a separate piece of legislation and not in the AHCA bill.

Velandry said this is a sign Republicans are talking out of both sides of their mouth.

“If Paul Ryan was right here, I’d like to ask him what he has for health insurance,” Velandry said. “I want what they have. I want my children to have what they have if, at the very least, they get to keep their Obamacare protections. Can you imagine, they’re getting hundreds of thousands in campaign contributions from health insurers while they get the best Cadillac health plans for themselves?”

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Information from: Foster’s Daily Democrat, www.fosters.com

Copyright © 2018 The Washington Times, LLC.

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