Vanessa T., Miami-Dade County
The reason I am sharing this deeply personal story is because without the Affordable Care Act, it's highly likely that I would not be alive today and able to do what I'm doing for the community. I know that if that's my truth, there are probably a lot of other people whose lives have been saved or deeply impacted by this very valuable and important piece of legislation.
Before I got sick, I was an educator. I worked for 30 years teaching religious studies and music. Both my father and husband were in the military, so I’ve had access to health insurance and health care throughout my life. When I came to south Florida, I started a really amazing job and had a great insurance plan. However, around 2011, I became severely ill. When I left work and went to see my doctor, he took my pulse and said, “Am I calling an ambulance or are you going to the hospital?” It was really unexpected. A lot of my organs were actually starting to shut down at that point. I was very, very, sick, and I was never able to go back to my job from that day forward.
I was the wage earner in my household because my husband is disabled. I went from having a wage to having a serious wage reduction while I was out on temporary disability. Since I was a contract worker, my insurance unfortunately ended when my contract ran out. I found myself suddenly without insurance, very sick, and unable to work because the doctor put me on bedrest for six months. I could not get up and go to the bathroom without experiencing tachycardia. I was going through a tremendous crisis and it was a terrifying time to be without insurance.
Since the state of Florida chose not to accept the funds to expand its Medicaid program, I wasn’t able to get Medicaid– despite not being able to work. We were on food stamps, but I couldn’t get Medicaid. If I had been in another state that expanded Medicaid, I would have been able to get it. I ended up getting COBRA health insurance coverage for a year, but there was a large bill attached to that coverage. Being on COBRA insurance was really difficult because I didn’t have an income, yet I had to pay the full amount for coverage. The cost of coverage was so high that I had to sell whatever I could sell just to pay for my health care. I actually sold my car that year for that reason, but I was fine with it because I’d rather live. Material objects can be replaced, but your life cannot.
As my year of COBRA coverage was coming to a close, I still needed to continue with my treatment and find a specialist. I have a blood disorder that requires being on top of it through testing and treatment three times per week, four hours per day. What was I to do without coverage? When I asked this question to the medical providers at a local hospital, I was told that I needed to basically wait until my heart started to fail and go to the Emergency Room to get stabilized. After getting stabilized, they would send me home. They wouldn’t treat me to get me to a point where I’m functional or well. Their only job is to get you stable, not to get you better. It’s terrifying because if you don’t get treatment, you’re just going to end up there again. But that’s how they said this would be handled. That was the answer before affordable care.
Fortunately for me, all of this was happening as the Affordable Care Act (ACA) was being passed. It was pretty much seamless for me. Just as my COBRA insurance ran out, the ACA came into being and I was able to get in on day one. It was perfect for me. Thanks to the passage of the ACA, I was able to get insurance and get covered for my disease. I was able to continue my treatment and ended up with a top hematologist/oncologist at the University of Miami (UM) who was able to look at my chart and figure out exactly what the problem was. I received amazing care at UM and received all the treatment I needed. So I was very blessed, and I can’t say that enough.
The beauty of the way the ACA was designed is that it embraces people who normally fall outside the box and would not have options if not for the ACA. That definitely would have been the case for me. Without the ACA, my disease and other comorbidities– including chronic obstructive pulmonary disease (COPD)– would have been categorized as pre-existing conditions, and we all know how complicated things would have gotten if that was the case. In addition to giving me access to affordable health care despite my pre-existing conditions, the ACA made it possible to afford health care without having to work for corporate America.
I’m still with my insurance through the ACA, and it is the only reason that I have coverage today and am able to get treatment for my condition. It has also helped me in other ways. For example, during the pandemic, a lump was found in my breast and I was able to just go and have it taken out. It was a non-event. Without the ACA, I would have had to wait until it became a big problem, at which point it would have cost a fortune.
That being said, the threat of the ACA being rescinded is scary. That’s on the table every year and bits and pieces of it get picked at. Every time they pick at the ACA, it changes things for me. Every year, I wonder, “Is it going to be here next year? Is it going to be affordable? Are people in Washington going to ignore the pleas for help, ignore the need, and simply do away with this? Or are they going to make it so unattainable that we can't have it? Receiving subsidies to pay for health insurance through the ACA was a life changer for me and has allowed me to invest in my health. The threat of rescinding the ACA has been there since it first passed, and the fear that this could happen continues.
I didn’t work for two years, and then I was only able to go back to work part-time for a while. It took about five years of care, but I’m now able to work, support my husband, and serve my community. Today I am the Executive Director of Bridge to Hope, a community service agency in southern Miami-Dade County that serves about 140,000 people per year. We feed the hungry, work with youth who are incarcerated, and offer a tremendous amount of programs that support the community. We assisted in crisis response after Hurricane Irma and throughout the COVID-19 pandemic. I wouldn’t be here today providing ongoing service to my community and building my dream without the Affordable Care Act.
More About the Impact of Vanessa’s Work
So we're currently serving about 10,000 people a month. Sometimes more, sometimes a little less. It's really incredible. Over the course of the pandemic, we served over 200,000 people. We ran vaccine clinics. We ran food distributions. We gave over $3 million worth of food to our community during the pandemic. We have COVID testing on-site, so when we had all those long lines all over the place, people could actually come here, pick up food, and get a COVID test– the rapid or the long-term one. Now we're actually giving people the home test kits, and we are delivering those to homes who aren't able to go out and get it, especially the elderly. They have no idea how to register for this stuff online and get it sent to them. But we just put it in the DoorDash car and send it right to their house. So we have done a tremendous amount to help our community during this time.
Part of that is my understanding that people need to be well. And to be well, you need to eat well. You need to take your meds. You need to have access. We do blood pressure screenings, blood sugar screenings, and all those kinds of things because so many of the people that end up here are not getting care. You don't know that you need to eat better or eat differently due to your high blood pressure because you don't know that you have high blood pressure. You don’t know that you have high blood pressure because you don't have insurance, so you don't go to the doctor. And down the road, that's a heart attack or a stroke waiting to happen. That's a very expensive thing to have happen to you. And if you don't have insurance and you end up in the E.R. with a heart attack or a stroke, that's a big bill that's going to fall back on the community. But it's also a big loss. It's devastating to the family. Employers lose good employees due to these things. Look at what we're hearing now about how there aren’t enough employees to come to work. We're all suffering because people got sick. There's a lot of people who are afraid of getting sick, don't have health care, and just can't take the risk of going out to work right now because they have nothing to fall back on. So it's a cycle.
We're very much about fresh produce, fresh fruit, and lots of organic foods. Our partners are Whole Foods, Fresh Market– all these wonderful places. So we make sure that our people eat really well. We're not about rice and pasta and dried beans. We're all about really supporting people eating well to be well and trying to point them to access. That's why we have health care Navigators that we invite to help our clients get on these wonderful programs and get set in the right direction. If we can just do those things, we will build a community, a state, and a nation that we all love to live in and can be proud to live in. We can be well and we can be whole as a nation, if we just do these things.
Now we have an epidemic of diabetes and heart disease and more. If you look at where that's happening, it's happening in lower income communities where people don't have access to health care. They're not getting those directives from their doctors and they don't have access to a nutritionist. They're not well fed. They're eating all the wrong things because that's all they can afford to eat. And I can speak to how that impacted my own life and how eating well impacts our own life. It's really very simple when it comes down to it. Everything is fixable.
Vanessa’s Thoughts on Medicaid Expansion and the Importance of Affordable Health Care
Medicaid expansion is vital to the community because so many people end up in the gap. I was fortunate that I had a car to sell, that I had things to sell, that I could pay for the health insurance at the time that I could. I had a life before I got sick, so I went through my savings. I sold my car. I sold lots of things that I would have loved to have kept that were precious to me. But not everybody has that option. I see those people in my parking lot every single day– people who don't have a safety net at all, and who have to take enormous risks every single day with their health because they can't get Medicaid. They would qualify for Medicaid in another state. They don't qualify for the Affordable Care Act because they're not working. I know people who get inhalers from anybody who will give them one. They have asthma, but they can't afford the inhaler. An inhaler is very expensive. I have COPD so I can't use inhalers. I have to use Xopenex, so that's an extra cost.
It's all these different things that people face. So they're making decisions every day because they don't have what they need. Again, this becomes something that impacts the whole family. If mom or dad is not well because they don't have the right medication, they don't have their blood pressure medication, they don't have their inhaler, they don't have what they need– then they're missing work, and that's money that isn't coming into the household. And then that comes back on us as a community because now we have to provide additional supports for those households. They need food stamps, LIHEAP, and a million other things just to get by because we didn't provide for their medical needs so that they could go out and provide for themselves. And that makes zero sense. The kids are missing school because they’re parents can't get them to school because they’re not feeling well. It's a snowball.
For myself, to be on public assistance was not my dream life. To take care of myself, that was my drive. And most of the people that we serve here, that's their drive. They just want to be self-sufficient. But if you can't get that piece under control, then you can't take care of yourself. And if you can't take care of yourself, then guess what? You need public assistance, and that costs money. So do you want to give me $2,000 or $3,000 a month in public assistance so I can survive, while contributing nothing? Or do you want to make Medicaid available to me so that I can get my medicine and I can go to work and pay taxes and contribute to society? To me, it seems like a no-brainer. I really don't understand it. But nevertheless, these are the decisions that get made in the halls of power, and those decisions not only impact people's physical health, but they impact their mental health, too. It's very depressing to be home and to be sick, and to not be able to take care of yourself, and to be on assistance, so that becomes just a whole other piece of the conversation that needs to be had. But Medicaid is a vital lifeline. And it can be the difference in whether or not somebody is able to significantly contribute and be sustainably self-sufficient and stand on their own two feet– or whether they're going to spend the rest of their life on public assistance.