Since the incident, Donna was told she owes an additional $888 for the procedure which has grown to over $1,174 as time passes, for which collection agencies have been regularly hounding her, but still has not heard anything back from her insurance provider. Donna looked into health care transparency legislation, but unfortunately, these policies only apply to medical plans, while dental plans are not held to the same standards.

At Families USA, we believe that oral health care is a critical component of overall health, and we must continue to push for comprehensive coverage to protect patients like Donna from experiences like this.

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“I knew I wanted a natural birth. When I went to my first OB appointment, it was not with my normal OB but of course you have to see everybody in the practice anyway because you never know who is going to be on call. It was the bedside manner of this OB that rubbed me the wrong way. I’m a people person, it’s my first time meeting you. I think for him he was doing his job. When I shared that I really wanted to have a natural birth, he basically laughed. And was like, while looking his notes, ‘Yeah, a lot of women say that.’”

When a friend of hers suffered a miscarriage during this time, Kea became concerned about the pregnancy symptoms she was experiencing. She left a message for the OB and when he called back it was clear that he had not taken the time to look up her chart.

“I started telling him what was happening, and he goes, ‘Wait, are you pregnant or something?’”

Due to this seemingly absent-minded care and lack of due diligence, and previous research on the matter, Kea decided to make a change and sought care at a birth center, which is when everything changed for the better.

“Every appointment was great. It was a very warm and friendly place. It wasn’t like the 15-minute appointment where you wait, get your blood pressure taken, are asked if you are good, and then you go home. I was there in the room having one-on-one connection at least for 45 minutes. Like, how are you mentally? What are you eating? How are you doing? If you feel something that feels weird, let us know. It was like, I’m not going to feel like a burden if I call.”

For Kea, the birth center experience was not just about having a baby; it was about having an experience that honored her as a whole person. Here were providers — doulas and midwives — who took the time to learn about her and how she was doing; listening and addressing her concerns and treating her with dignity and respect.

The birth center formed a community for Kea, her husband, and other birthing people with similar due dates. They met on a regular basis to learn about pregnancy, such as post-partum depression, which two months after giving birth to their son, her husband would be able to flag on Kea’s behalf.

“The first midwife is the one I am still friends with until this day. One of the things I really liked is that she involved my husband. She gave him the heart rate monitor and showed him how to find the heartbeat and how to do the belly measurements. So, she’s educating him too, which I really appreciated.”

During the third trimester, “you have a centering group, and you meet with all the other moms who are due when you are. You have these meetups with other women who are just as pregnant as you, a nice diverse mix of women. Every class, that week, you are also pulled into your appointment. So you get this social group. You get your appointment done. Now we are building a community.”

When it was time to give birth, the birthing center welcomed her, her husband, and family and friends with a comfortable suite that included a full bed, calming lighting, a nice bathroom with a whirlpool tub, a playlist and a rocking chair where the seat breaks away. During labor, Kea’s midwife and doulas were with her every step. Since she was 11 days past due, she had to be induced, but they respected her wishes by using natural methods.

“I had my doula and her assistant. We were walking around doing labor movements. My husband was there, and they were coaching him on what to do. And when he got tired, they tagged in and helped.”

After several hours of labor in the tub, her doula became worried about Kea’s son’s dropping heartrate and it became clear that Kea needed more assistance. During the ambulance ride Kea’s midwife was with her and at the hospital her doula and midwife continued to stay by her side. They learned the reason Kea was having such difficulty was because her son had become positioned at such an angle that prevented a vaginal birth. Kea’s midwife broke the news to her — Kea had not wanted an emergency C-section from the beginning but because she trusted her midwife she accepted it. And in the operating room, her midwife made sure that Kea was not alone and ran to get Kea’s husband when Kea asked.

Exhausted from over 40 hours of labor, Kea’s doula and midwife helped her nurse her son by holding him for her. What’s more, this support network continued well after Kea gave birth with her midwife continually checking in on her. The birth center remained a place for Kea to come to receive further support, such as with lactation classes and being in community with the other moms on similar journeys.

In the end, thanks to the collaboration between traditional medical pathways and more whole person care ones like birth centers and their providers, Kea was able to achieve her intent.

“I wanted my birth to be an experience, my experience.”

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Unfortunately, he quickly realized that this plan was not comprehensive — his doctors’ visits had a steep $75 copay, specialist visits were not covered, and his medications for ADHD were not included, costing him more than $300 monthly to refill his prescriptions, on top of the $150 a month premium. While the insurance was affordable upfront, “they nickel and dimed me. And I think the frustrating part for me was the lack of options but also the lack of protections. I think there are so many people who, like me, lose insurance without it being a major life event and end up with options that are almost worse than not having insurance. Because not only did they essentially cover nothing, I was also paying them to cover nothing.” 

In December of 2018, Nate was experiencing digestive issues that were affecting his ability to eat, sleep, and to do his job effectively. Nate went to several doctors and underwent two surgeries to identify the source of the problem, which was later identified to be a fistula. Thankfully, the second surgery was able to address the issue, and Nate started to feel some relief. However, this relief was short lived when the bill came.  

Neither surgery was covered by insurance, and Nate found himself, at 23 years old, working his first job out of college, facing more than $13,500 of medical debt. Not knowing what to do beyond paying down the cost, Nate started a payment plan in January of 2019, and did not finish paying off the debt until four years later. 

“I didn’t know what to do. And I know many people wouldn’t know what to do in my situation. I hope that someone can read this story, and see that there is some recourse they can take, and places they can turn to for help.”  

In 2024, Nate received a settlement from the Federal Trade Commission following a lawsuit against health care company Benefytt Technologies (also going by the name MyBenefitsKeeper). According to the suit, Benefytt lied about their coverage plans using false advertising practices, and their plans were not qualified under the Affordable Care Act (ACA) lacking key consumer protections. Though Nate received a small payment, it didn’t come close to the amount he lost in premiums and health care expenses. 

Nate was a victim of this “junk plan” which not only made it difficult for him to receive affordable care, but resulted in thousands of dollars of medical debt. Unfortunately, we know that Nate’s story is not unique; more than 450,000 people paid Benefytt Technologies for health coverage, and did not get the return on investment they deserved.  

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When Holly’s husband was unexpectedly laid off in January 2024, her first thought was about how to make sure the family had health coverage to meet their needs, on top of the stress of the household income being reduced by about two-thirds. So, Holly went to kynect, the state-based marketplace, and put in her information to search for a plan. There was some initial trepidation at the beginning of the process, “I wasn’t sure how to put in some of the information about how our household income had changed, but the person I spoke with on the phone was really helpful and walked me through the process,” Holly said.

The family was eligible for a qualified health plan (QHP) with advance premium tax credit (APTC), a refundable credit that helps families and individuals to afford premium payments for plans purchased through the Marketplace. This allowed them to afford a really good plan — one that was comparable to what they had and was even better than some of the high-deductible plans that they’d had over the years. Before her husband was laid off, their household income was around $200,000 annually. Out of his paycheck, they paid about $800 for their family plan with his ESI. When he lost his job, their income became $65,000 — which is a pretty steep cut. With the help of $1,500 in APTC, they now pay a little under $300 a month for an Anthem Silver plan and dental coverage.

“I was impressed that I started the process to get our family coverage in the middle of January and was able to get our coverage sorted out so that our family did not have a gap in coverage. My husband’s employer-sponsored plan ended on January 31, and our QHP coverage began on February 1.”

“There would be no “affording” health coverage without the APTC. We have house payments, a car payment, a student loan, utilities, groceries… if we had to pay full price, or even the $800 that we paid when my husband was employed, we wouldn’t be able to keep our heads above water. For now, it is lean and we are making it work on just my income and our savings as he looks for another job, but we are meeting our needs. I freak out if I think about what happens if the savings runs out before he gets a job, and I’m afraid if health insurance becomes a casualty in the battle to keep our heads above water. It isn’t a happy place to be, and that’s why I am SO grateful this was an option for us. It is literally saving our lives because we can continue to take our medications and go to the doctor.”

Being able to afford health insurance and having health coverage was a major concern for this family, like so many others across the United States. It was Holly’s most immediate fear when her husband lost his job, before any of the other financial impacts on the family.

While her husband interviews for new positions, Holly says that she “cannot possibly be more grateful that we had this opportunity to have quality insurance that meets our needs, and that we received APTC that made it affordable for us, even in our new financial circumstances.”

The post Holly H., Kentucky appeared first on Families Usa.

As her medical proxy due to the severity of Stephanie’s condition and disability, her mother Lauren began calling the insurance company and was told they had two weeks to approve the requested service. When she stressed that the doctor had indicated the matter as urgent, she was told it would be escalated within their system. However, the next day the status remained unchanged and only after repeated phone calls did the insurance company change the prior approval window to within 72 hours.

Stephanie’s mother, Lauren, has worked for years as a healthcare advocate and was well versed in how to gather data and handle insurance appeals, and yet the process was still daunting, drawn out and complicated. Throughout this experience, Lauren wondered “what is happening to other patients who don’t have this knowledge?”

Stephanie is currently covered by private insurance under the disabled dependent provision, and is also covered by New Jersey state Medicaid under disability. This resulted in some confusion when her parents were also told that prior authorization was required for both private insurance and Medicaid. This is incorrect – it is only required for the primary, and Medicaid follows suit, but families may not be aware of this. Finally, the prior authorization department called after the close of business Friday prior to a three-day weekend saying her iron transfusions had been approved but now needed to be scheduled, further delaying necessary treatment. In the meantime, Stephanie, a medically fragile patient, was dizzy, sleepy, and almost ended up in the ER with a completely preventable hospitalization for a simple outpatient procedure. Prior authorization should not be needed when a condition is life-threatening, or a procedure is time-sensitive.

Stephanie, now 31, has five life-threatening conditions that require full-time care coordination, which is mostly provided by her mother. In addition to managing her daughter’s health, appointments, medication, insurance appeals, and prior-authorization, Lauren dedicates her professional life and the remainder of her personal life to advocating for better health coverage and care in the United States.

The post Stephanie Agoratus, New Jersey appeared first on Families Usa.

In 2021 Christine was staying in Utah when she became very sick and required treatment at a children’s hospital out of state. Due to the severity of her condition and the urgency required, she was sent via ground ambulance across state lines on an hours-long journey to the hospital where she received the necessary surgery. 

A lack of transparency and consistent communication meant that Christine’s parents, who were out of the country at the time, did not feel they fully understood the care she was receiving or how much everything would cost.  

“My parents got a surprise bill about two to three months later, a bill of more than $5,000 from the ground ambulance transportation. And it really at the time was a huge financial toll on my family.”  

The hospital also did not provide an interpreter who could coordinate with Christine’s parents in Chinese, their first language. They weren’t aware that the ground ambulance would not be covered by insurance, and with all the required follow-up care, Chrstine’s family accumulated significant medical debt, “an additional stress added on to my family.”   

Surprise medical bills impact millions of individuals and families in the United States, sending some into debt from which it may take years to recover. The No Surprises Act (NSA) went into effect two years ago and has provided protections to keep surprise bills from coming out of your wallet. Advocates like Families USA are fighting to keep the NSA intact, and are also pushing to expand federal protections to include out-of-network ground ambulance bills, and bills in urgent care facilities. The federal government must do more to protect families like Christine’s.

The post Christine Wood, Washington DC appeared first on Families Usa.

Speaking at The Black Women’s Round Table, Cassandra Welchlin heard Lakeisha’s story and gave her the opportunity to speak at another event at the Capitol, where she became involved in raising awareness for issues surrounding the Medicaid coverage gap. During her pregnancy and for six months postpartum, Lakeisha was covered by Medicaid, but once that eligibility ran out, she was forced to either go without coverage, or select a high-cost plan provided by her employer.    

Over the last decade, Lakeisha has worked as an internal support group agent (ISG) at a federal call center in Mississippi. As an ISG she assists other agents with calls for Affordable Care Act (ACA) and Medicare coverage and enrollment, and is also responsible for taking escalated calls where a supervisor is requested.   

“I am considered an essential worker for United States and yet my health coverage is worse than the consumers that contact us.” 

When she started in 2014, Lakeisha wasn’t fully aware of her own options for health coverage and had to choose between two plans: one with a zero monthly premium and a higher deductible of $4,500 a second plan that was $77 with a deductible of $3,000. If she had added her son to the policy, it would have been $177 every two weeks in the bronze category. As a single mother, all these options came at an extremely high cost.  

“It’s hard. Every day is a struggle; every day is a question of when and how can I feed my child for the next week?”  

Lakeisha is part of a group of essential workers fighting for $25 an hour wages, with the rights to form a union without intimidation and better health coverage. Lakeisha wants people to know that “working at a Medicare and ACA call center is more than just picking up the phone and getting people enrolled into health coverage. We provide essential health coverage for the whole United States, we’re not only a representative of ACA and Medicare but we’re also counselors when it comes to helping you choose the best coverage for you and your family. We’re also teachers to help you learn about the ACA and healthcare.gov, motivators to encourage you to update information correctly to make sure you contact us with all concerns and questions.” 

The post Lakeisha Preston, Mississippi appeared first on Families Usa.

In early 2020, Laura Burgstaler, a research scientist at the University of Minnesota began getting sick, and she would stay sick for weeks and months without improvement and without a pinpointable cause. After three years of struggle, seeing multiple doctors and specialists and fighting for her health, Laura finally received a diagnosis of an autoimmune disease. However, despite having name(s) for her condition, as well as supposed treatments, Laura has not experienced any relief or improvement in her quality of life.

“I have four children, they have had to watch their mother go from being incredibly active to barely able to get out of bed.” After multiple years “having issues getting any answers from the health care system” Laura now has to see at least one doctor every week, sometimes more than one, on a constant basis.

This yields immense frustration when the systems and doctors do not work together, “I see so many different specialists, they don’t talk to each other, and they just add on” Laura says. And if managing the never-ending roundtable of medical professionals she has to see regularly just to keep healthy isn’t enough on her plate, Laura also has a monthly budget to contend with. Her regular doctor’s appointments always come with a co-pay, and her prescriptions total upwards of $300 per month.

Like so many other Americans, Laura sometimes has to make a choice of what essentials to buy; with prescription drug prices so high, and often not covered by insurance, there isn’t enough money to go around. “Sometimes I am faced with the question of, do I buy food for my kids, do I get gas in the car, or do I take my medication? There are times when I don’t take my medication, because I have to feed my kids, and I have to get to work… I am a research scientist, I am in the field I want to be in, I don’t want to stop working.” Unfortunately, due to her condition and the inability of doctors to provide her with consistent relief or pain management, Laura had to give up her dream job and take a different position.

Through her current insurance provider she has had to appeal many times to get prescriptions and procedures covered. This process can take more than a year and sometimes has nonsensical results. For example, she appealed when Linzess was not covered and would cost her $500 per month, and the alternative drug suggested for her also was not covered. At the end of the appeal, the insurer determined that Linzest rather than the alternative was better for her — but the insurers still declined to cover it. In another similar case, her IVIG infusions (Intravenous Immunoglobulin Therapy, for people with weak immune systems) took two years to get approval with over 10 appeals to the insurance company and three doctors appeals as well. Laura sometimes feels that she is being “sent on a wild goose chase” with insurers telling her to take one medication that is covered, then it will be denied due to her specific use case, they will refer her to another medication, which was one she was denied in the first place, and then the cycle continues.

She is also concerned that her insurers’ local provider network does not have expertise in her rare diseases. She would like to travel to a specialty center in New York or Cleveland, but the expenses to travel there while caring for her family are prohibitive.

Laura said that being a person with an autoimmune condition is like entering the health care system to be “treated as a number. The doctors just want you to come in for a couple of minutes, and then they say goodbye.” Laura does not have a case manager specifically provided to her to assist, or, if she does, they are not consistent nor timely. Fortunately, over the past five years, Laura has had the same primary care physician who has been with her through diagnoses and tests, and has advocated with specialists on her behalf. Even with that person in her corner, Laura is still sometimes having to fight to be taken seriously and treated well.

Laura is not a number, or a grouping of symptoms, and she is more than any diagnosis, she is a scientist, a mother, and she deserves care and respect from the U.S. healthcare system.

The post Laura Burgstaler, Minnesota appeared first on Families Usa.

Deidre was 60 years old and on Marketplace insurance when she was diagnosed. She went in for her regular annual check-up and got bloodwork done, which showed that her glucose was high. She hadn’t felt any symptoms.

From there, it took Deidre 7 months to get a correct diagnosis. Her doctor originally thought she must have Type 2 Diabetes, since it had manifested at age 60, but Deidre knew that wasn’t right. She didn’t have any of the other characteristics, and she was dealing with a number of other conditions including multiple sclerosis. Finally, she was diagnosed with LADA.

When she was first diagnosed, Deidre was on marketplace insurance, and she kept her insulin costs down as much as she could by altering her diet. However, since she first got diagnosed, the price of her insulin has tripled, and she’s transferred onto Medicare which doesn’t offer the coverage she needs. In January, her out of pocket costs will be about $210 a month, her deductible is $445, and the list price is $1,500 and only rising.

Deidre now gets half of her insulin from Canada. She says it’s easier to just go across the border and get it herself, but of course, during the COVID-19 pandemic, she can’t do that. There is one pharmacy in British Columbia that ships insulin to the US, and she has developed a relationship with them. She even recommends that friends buy their insulin with this pharmacy.

The post Deidre Waxman, Massachusetts appeared first on Families Usa.

“I don’t bother even to try and get it in this country,” says Gail, who is an active advocate with a group called Raging Grannies, which fights for environmental and social justice issues, including health care transformation. “I can get it for $81 a month but if I get it here it that would wipe out my entire annual benefit and that’s just one of the five or six drugs I take.”

Ordering from Canada is a complex and time-consuming process requiring numerous email and telephone communications to get her prescriptions filled properly – sometimes taking as long as a month – but she doesn’t have a choice. “There are other drugs I can order by mail for less than the copay. I would be spending a ton more on medication if I were living solely on my pension,” Gail says. “I would really be up the proverbial creek, it would be really, really hard.”

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