Real Stories Of Americans Who Will Be Affected By The Proposed Changes To The ACA — And What YOU Can Do To Fight

With the proposed changes to the Affordable Care Act (ACA), 20 million Americans are at risk of losing their health care coverage.

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A survey, conducted by Brunswick Partners, found that “75 percent of Americans agree that the proposed changes to Medicaid in the AHCA are a bad idea. And that we should not allow 14 million Americans to become uninsured even if there is a potential to reduce Medicaid spending. These results are significant because they find majorities of Americans identifying as conservatives (55 percent), moderates (82 percent) and liberals (90 percent) are opposed to the AHCA’s Medicaid provisions.”

Some of the proposed changes to the ACA made by the House include:

  • Over $800 Billion in cuts to Medicaid*

  • Elimination of the Medicaid expansion*

  • Reversal of the pre-existing conditions clause

  • Elimination of many of the essential health benefits (EHB)

  • Cuts to behavioral and mental health coverage

  • Raises in premiums for those over 65

  • 30% surcharge for those who don’t have coverage in order to get coverage

  • Eliminates Federal subsidies and replaces them with tax credits based on age

  • Elimination of many of the workforce diversity provisions

  • Inclusion of high-risk pools

  • Shift to per capita caps and block grants

  • Elimination of women’s healthcare coverage

  • Lifetime caps

*These Medicaid cuts and caps are not at all related to the ACA, but are only there to “pay for” for the tax breaks for the wealthy in the bill.

Terms to Understand:

Affordable Care Act (ACA) – also dubbed “Obamacare”

– American Health Care Act (AHCA) – also dubbed “Trumpcare,” which is the bill proposed by the House.

– Essential Health Benefits (EHB) – the ACA required that EHBs be covered on all healthcare plans.

– Medicaid – is also called Medical Assistance or MA

Harry Nelson, co-author of the book, “From ObamaCare to TrumpCare: Why You Should Care” estimates that the number of Americans who lose health coverage could be closer to 30 million, and the biggest nightmare of the proposed changes is this fact: those with pre-existing conditions will lose their ability to be insured.

Nelson also states, “the essential health benefits (EHB) that are currently required under all plans was life changing for many families, especially those with addiction treatments and mental health concerns. The ACA also provided dramatic change to families with children with special needs. The Republican plan is to get rid of the EHB and pre-existing conditions. The super conservatives see $100 billion in their pockets. They want tax cuts, and in order to balance the budget it means eliminating the overall costs of health care.”

“The working middle-class who have jobs without company insurance are going to be the hardest hit, along with the 50-65 age group,” Nelson added. “The two parts of the ACA that Americans loved most was the elimination of pre-existing conditions, and the ability to keep your children on your policy until age 26. Under the new proposal, if you lose your job you may never be able to get insurance again if you have a pre-existing condition.”

REAL STORIES OF AMERICANS AFFECTED BY THESE CHANGES:

Tymia McCollough, age 11 – Georgetown, South Carolina

Tymia was born with sickle cell anemia type SS. While her mother is a carrier, she does not have sickle cell. As a Medicaid recipient, Tymia has received blood transfusions, optical care, ER attention, medication in and out of the hospital, and undergone two surgeries. These treatments gave her the chance to thrive and grow through her treatments at MUSC Children’s Hospital. Today, Tymia is an ambassador for the American Red Cross, leader on the police community board, involved with the elderly in her community, enjoys pageantry, modeling, singing and ballet. She is an ambitious young girl, who is best described as BRAVE.

“Medicaid is very important to Tymia because it allows her to see the doctors and specialists who help her sustain a great quality of life. Medicaid has guaranteed that my daughter will receive consistent and effective medical care. Without it, she may not be here today. For this, we are truly grateful.” – Tymia’s mother, Susie.

Katie Alee, age 16 – Minnetonka, Minnesota 

Katie was diagnosed with complex movement disorder, a rare form of cerebral palsy, when she was a year old. Her condition requires ongoing and constant medical care. Medicaid has assisted Katie’s family from day one with access to quality and affordable care. Katie has grown into a vibrant young woman who can advocate for herself because of the care she has received throughout her life with Medicaid assistance. An example of this is when her elementary school’s playground couldn’t accommodate her power wheelchair, she used her voice and an accessible one was built. Her care at Gillette Children’s Specialty Healthcare in St. Paul and her Medicaid insurance empowered her to speak out.

“Knowing that Medicaid is there for Katie should anything ever happen to me is vital to me and my peace of mind. And Katie’s future needs are not really known at this time, so we need to make sure there is always an affordable healthcare opportunity for Katie.” – Katie’s mom, Edwina Alee

Apollo Howell, age 3 – Austin, Texas

Apollo Howell was diagnosed with tracheoesophageal fistula, esophageal atresia, tracheomalacia, lung disease, acute gastroenteritis, reflux disease, chronic gastroparesis, and cyclic vomiting syndrome when he was born. He spent the first 171 days of his life in three different Neonatal Incentive Care Units (NICU). Through his Medicaid insurance and the pediatric surgeons and physicians at Cincinnati Children’s Hospital Medical Center and Dell Children’s Hospital, Apollo’s trachea was successfully rebuilt and his esophagus was repaired. Today, Apollo is an unstoppable force of nature, and loves to play with trains and swim.

Khalil Pereira, age 22 – North Brunswick, New Jersey

Khalil was returning from college with one of his friends when the driver fell asleep at the wheel and lost control of the vehicle. The car flipped 15 times. During his six-month inpatient stay at Children’s Specialized Hospital, Khalil received phenomenal medical and nursing care and intense physical, occupational, speech and recreational therapy. His family received hope and reassurance during a critical time of shock and uncertainty. After treatment, Khalil was able to talk, walk and do all his daily activities on his own. All of this phenomenal progress was made possible by Medicaid assistance. Despite some persisting cognitive issues, Khalil is now employed and works part-time as a store clerk.

“When I learned of Khalil’s accident I was on my way to work, I was blown away by the news and my family was in shock. Without Medicaid I would not have been able to pay for his medical treatments. At the time of his injury I was a single mom of three boys working only part-time.” –Khalil’s mother, Shanette.

Kenedi and Kendal Breyfogle, Pierre, South Dakota

Twin sisters Kenedi and Kendal were diagnosed with acute myeloid leukemia at 3 months old. After 17 months in remission, Kendal relapsed and now, at day +40 from her transplant, the cancer has already returned.

Kenedi and Kendal’s mom, Abby Breyfogle, is one of many #IAmAPreexistingCondition video stories posted on The Leukemia & Lymphoma Society’s Advocacy Facebook page, as Kenedi and Kedal have preexisting conditions.

Susan Helene Gottfried, Wexford, PA In January 2016, Susan had a bicycling accident that almost took her right eye. She’s now dependent on daily meds and routine scans of the back of the eye to make sure the damage doesn’t turn into glaucoma, and to make sure the retina repair holds and no new scar tissue forms, requiring more surgery. With every surgery comes decreased vision. Glacuoma, of course, causes damage to the optic nerve that results in blindness. The proposed changes to the ACA will either knock Susan off insurance altogether (given her pre-existing condition) or make her meds and the retinal scans unaffordable to her as a single mother.

Eryn Paxton, Charles Town, West Virginia

Eryn works in Virginia as a clinical social worker for adults with a dual diagnosis with IDD and SMI. Eryn explains, “I can say many people I work with would be impacted (and possibly even my job in the long run), but on a more personal level, I have an amazing 17-month-old son who recently was diagnosed with epilepsy as a result of a lesion in his brain. This year alone we will pay at least $22,000 out of pocket to cover just the health insurance costs and make sure he has the treatment he needs. We are moving in two weeks to a more affordable home so that we can meet his current medical needs and cover additional expenses that we may have to travel and seek treatment out of the area.”

Eryn continues, “Even for a family with a moderate income and ‘good insurance,’ the possibility that my son could be denied coverage due to lifetime maximums (he’ll need brain surgery soon, and possibly more surgeries along the road) is terrifying. In addition the proposals to allow states to charge higher costs to individuals who are sick would make it impossible for our family to afford the care my son needs—and will need. We have a long road ahead of us, and I lay awake at night worried for my son, and my family’s financial future. It shouldn’t be that way. I shouldn’t have to worry if we will be able to afford the medical care my son will need to live. It shouldn’t be a choice I have to make, but sadly is the reality for our family. I get tears in my eyes just thinking about it. I just want lawmakers to see my sweet boy and know that this issue has a face.”

Heather Childs, Coatesville, Pennsylvania Everyone in Heather’s family has pre-existing conditions. She states, “Three of us have autoimmune diseases that cannot or will not ever be cured. They can be maintained with expensive medications. Except my son, a Type 1 diabetic, who will die without his insulin. I worry about my kids as they finish college, already many thousands of dollars in debt, who may not be able to get insurance because of their conditions—or have to pay more.”

Amy Zellmer, Saint Paul, Minnesota Amy is currently on Medicaid through the expansion. As a single adult without children, Amy says that she is fortunate for the expansion that has allowed her affordable healthcare the past few years while she got back on her feet financially after sustaining a traumatic brain injury from a fall on the ice.

Matthew M. Massee, Salt Lake City, Utah Matthew explains that he and his wife do not have enough income to add her to his company health insurance without going into debt. Medicare rejected his wife because she is a “documented immigrant” (their words). The proposed change to the ACA—that will add a 30% premium surcharge to people who do not currently have insurance—will add another financial barrier that prevents this family from entering the insurance market.

Linda Ware, Bellaire, Texas Linda lives 20 minutes from the famous cancer hospital, University of Texas MD Anderson Cancer Center in Houston. She was lucky to be treated there when she was diagnosed with invasive breast cancer in October of 2013. After 30+ years in media, her job was eliminated in January 2016. She stayed on COBRA at almost $1500 per month, which runs out at the end of August 2017. MD Anderson Center is working with her to advance all her appointments to fall within that deadline, but Linda says, “then I’m on my own.”

Roy Steele, San Francisco, California

“If the Affordable Care Act is repealed, it will be the most controversial act of cruelty, inhumanity, and political malice in our nation’s history,” Ray said. Before the Affordable Care Act was implemented, Roy was deathly ill and drowning in medical bills. He lost his home when the insurance company terminated his coverage because he reached lifetime spending limits. “I am a survivor of childhood sexual abuse. I am a cancer survivor. I am living with HIV. I am living with PTSD. I am living with other maladies. I lose sleep nearly every day from the stress related to the Republican party’s promise to repeal and replace the Affordable Care Act. Medication keeps me alive. The excellent care I receive from the doctors and healthcare professionals at University of California, San Francisco Medical Center keeps me alive. The AHCA will have a tremendous impact on the care I receive today. Reducing essential health benefits, and cutting Medicaid, threatens my physical health, my future, and my long-term survival.”

Dawn Hamilton, Los Angeles, California “As parents of a severely disabled child (she went without oxygen at birth and has cerebral palsy and a host of medical conditions as a result), we rely heavily on the combination of private insurance coverage and Medi-Cal (California’s version of Medicaid). Because of the extensive therapy, treatments and medical care we’ve been able to provide my daughter, she is growing and thriving today despite her disability. My husband and I are both self-employed. The thought that pre-existing conditions may make our access to healthcare more difficult or more expensive…the thought that the lifetime limits/caps could return…less options for self employed people…reduced Medicaid resources…less access to the high level care we are dependent on…losing nursing support that allows me to work while my daughter is cared for—all of it is terrifying. My only saving grace in all of this is that we live in California where we have legislators like Kamala Harris and Dianne Feinstein looking out for our best interests.”

WHAT YOU CAN DO TO FIGHT:

Send this article to your senators, along with your own story of how YOU will be affected.

Share this article far and wide on your social networks.

Meet in person with your members this week! Share you story!

If you cannot meet in person, call the Capitol switchboard at (202) 224-3121. A switchboard operator will connect you directly with the Senate office you request

Social media – (sample tweets at the end of this toolkit): http://www.c-c-d.org/fichiers/June-6-Day-of-Action-Toolkit.pdf

More national and state-specific info: https://medicaid.publicrep.org/

Additional information on Medicaid: www.protectourmedicaid.org

Amy Zellmer is an award-winning author, speaker, and advocate of traumatic brain injury (TBI). She is a frequent contributor to the Huffington Post, and has created a privateFacebook group for survivors and also produces a  podcast series. She sits on the Brain Injury Advisory Council (BIAC) through the Brain Injury Association of America’s and is involved with the Minnesota Brain Injury Alliance. She travels the country with her Yorkie, Pixxie, to help raise awareness about this silent and invisible injury that affects over 2.5 million Americans each year.

In November, 2015 she released her first book, Life With a Traumatic Brain Injury: Finding the Road Back to Normalwhich received a silver award at the Midwest Book Awards in May, 2016. Her second book, “Surviving Brain Injury: Stories of Strength and Inspiration”is a collection of stories written by brain injury survivors and caregivers and was released November 2016. for more information:www.facesoftbi.com

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