Selena Gomez, Nick Cannon, Toni Braxton and Seal all have Lupus.

03/30/2017 06:03 pm ET

So do Mercedes Ibarra and Kikki Eder and for these two who saw marked improvements under ACA, dropping the vote to repeal and replace it last week still leaves them frightened about their healthcare future

Kikki Eder is 61 years old, formerly employed full time as an internal healthcare auditor for a hospital. After being laid off from her job in 2008 because of hospital cutbacks, she pursued a new career as an artist, fiercely pursuing a way to continue working and supporting herself. Eder was enjoying success as an artist until 2012, when she was diagnosed with lupus, suffering constant joint pain, fatigue, pleurisy, brain fog and anemia.

In 2013, her lupus became so debilitating she could no longer work at all. Her medical costs were overwhelming, premiums alone were over $800.00 a month, and since lupus is considered a pre-existing condition, she could not get affordable insurance. She was living on money saved for her retirement and help from family.

“The ACA and Covered California has been a Godsend,” said Eder. “It has made a difference because lupus has affected my life in every way possible physically, emotionally, financially, socially. I would never be getting the treatment from the doctors I can see now without it, it’s incredible. I’m functioning so much better with this level of medical care, I can make plans, do errands and leave the house.”

Even though the vote to repeal and replace the ACA was dramatically pulled minutes before the vote was to take place, Eder remains skeptical about future healthcare overhaul.

“I’m deeply concerned about what may come, I think this is only a temporary relief. I don’t trust or have any confidence in what may happen to those of us with chronic diseases, they don’t care about us at all,” she said.

Currently, Eder pays $294.00 a month for her PPO plan under Covered California, the pre-existing stipulation for lupus no longer an issue under the ACA, and a $3 co-pay for the more than 6 medications she takes. She was denied disability, consulted a lawyer to appeal the decision and has been waiting more than a year and a half for a hearing date.

Lupus affects 1.5 million Americans and more than 5 million globally. Lupus attacks the immune system, causing pain, inflammation, organ and tissue damage, extreme fatigue and can target anywhere in the body including causing serious facial skin rashes from the sun. Nearly 90% of lupus patients are women, the onset of the disease usually occurring between the ages of l5 and 44, with African-Americans 3 times more likely to get lupus than Caucasians and Latino women 2 times as likely to be hit. It is the leading cause of stroke, heart and kidney disease among young women and the number of patients diagnosed with lupus is growing yearly, especially among children and teenagers. In addition, there are few similarities between patients with lupus, it affects each individual differently, often making a firm diagnosis difficult for those who do not have access to specialists.

There is no cure for lupus, and we at Lupus LA, including Toni Braxton who is on our Board, are working hard to raise awareness to fund research to find a cure for this little known, major disease that is more common than MS, Cerebral Palsy and Cystic Fibrosis combined. Since 2000, Lupus LA has raised more than $10 million to fund research, create support groups and assist those diagnosed with lupus with critical medical information, patient conferences to meet doctors and specialists, scholarships for those in need, emergency grants and refer doctors. With global reach and recognition while based in LA, Lupus LA has become the “go to” for the latest in research regarding new drug therapies, world renown doctors and researchers, support systems and a staff committed to reaching out to everyone who has a question about the disease.(www.lupusla.org)

“Lupus LA has been a great resource for me since 2012,” said Eder. “There’s a support group in my area where I can get the latest information on new drugs, recommendations for doctors and specialists, meaningful coping strategies, resources and sharing symptoms with others who suffer from lupus.”

“The goal at Lupus LA is to be comprehensive and invaluable. We work directly with lupus patients and their families to help them navigate the challenges of their disease and we also work to raise worldwide awareness through our celebrity ambassador program to help educate the public about lupus,” said Adam Selkowitz, Chairman of Lupus LA.

Mercedes Ibarra enjoyed an active, full time career in the entertainment industry as a Flamenco dancer, spending her evenings and weekends performing in Spanish restaurants and theatres. Recently diagnosed with lupus, the 40 year found it harder and harder to continue her work.

“I was having crushing fatigue, severe muscle pain, migraines, hair loss, heart palpitations, high fevers and pelvic floor dysfunction making it harder and harder to dance,” said Ibarra. “I had to pare down my work, spending most of the week in bed and trying to work on the weekends.” When she couldn’t keep up her theatre and restaurant commitments, Ibarra turned to teaching dance two days a week. “The kids I teach know I have lupus,” she said. “I’m trying to continue to work while managing my symptoms.”

Ibarra credits Lupus LA for helping her find doctors at patient conferences. “The support group I attend once a month has had a big impact on my life. I’ve made friends who have been great, we share our experiences and how lupus impacts our families, our work, and it’s a new crossroad for me. I got great information at a patient conference that led me to a cardiologist and this has helped me a lot.”

Ibarra signed up for ACA coverage under Covered California in 2014. “It has made a huge difference. It was the first time I’ve been to a doctor in years, I couldn’t get coverage before. And the only reason I can do any teaching at all now is because the medical treatment I’m getting now is great, it’s helping me feel better so I can work.” she said.

Ibarra just got an increase for 2017 under the ACA, now paying $294.06 a month, with a $3 co-pay for the 5 different prescription medications she needs, as opposed to the $800 or $900 a month on the open market, if she could get insurance. “I’m still frightened even though the vote to repeal and replace was pulled,” she said. “ I’m sure they still want to replace it, but with what, I haven’t seen anything that provides the same level of access I have now, plus it is more expensive with less coverage.”

“Since the affordable care act has been in place in California, I have seen my patients have improved access to insurance and healthcare. They have also been able to contemplate different job options without fear of losing the health benefits. The variety of plans available has allowed patients to look for programs that best fit their needs,” said Dr. Jennifer Grossman, Rheumatologist and member of the Lupus LA Medical Advisory Board. “I am very nervous about the possibility of going backwards to a time where such programs don’t exist. If this happens, our patients will suffer.”

According to the latest Congressional Budget Office Report, more than 24 million fewer people will have coverage over the next decade if the ACA is overhauled, which again is currently being discussed, 14 million of those alone by next year if new action is taken, Eder and Ibarra likely among them. Without an immediate plan in place to cover those 24 million, they will be unable to sustain their current health status, with little chance for improved wellness, re-gain jobs and input into society. Under the ACA, they are paying less for coverage, getting better quality, more comprehensive, accessible care, resulting in marked improvements in their conditions.

Both women expressed concern that the perception of the ACA is that “it is some sort of giveaway, which it is not,” and also want those reading this to know they have held jobs, worked hard to support themselves and families, paid taxes and been responsible citizens. Rather, it is their medical condition that prevents them from working full time to get employer sponsored insurance and without their current insurance, all of the progress they have made improving and managing lupus, will send them spiraling backward, and their overall health will regress. Without the ability to get better, sustaining affordable healthcare becomes nearly impossible, thus increasing the cost for all of us.

“I’ve had a lot of stress over this,” said Eder. “My life depends on this insurance, and if it all goes away, this leaves me up in the air. Since lupus is a pre-existing condition I may not be able to get any insurance at all, then what am I supposed to do, leave the country?”

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