What the ACA Means to Average Americans

Last week I posted something to Facebook about how upsetting it was that the GOP is taking actions to dismantle the ACA. That post ended up in the trending topics on Facebook, and I had to turn it to friends only as a number of strangers and trolls decided to chime in. I was headed out of the house for the Women’s March and couldn’t address the ugliness entering my feed, so I put it on lock down.

I thought I would take the time here on my blog to post in more detail, though, and address some of the rhetoric I’m hearing out there. I can offer some additional insight into the issues since I’ve worked in the healthcare field (to be specific, I worked in the Administration and Finance department dealing with contracts, physician payments, and Board meetings). Others in the healthcare may have a different take, I suppose, but here is mine.

First, a note: There has been a lot of spin about what the Affordable Care Act (a.k.a. Obamacare) is and why people want it. Republicans have lobbied hard against the ACA for years. Many people have forgotten that the original iteration of the ACA was torn apart by Republicans and what we were left with is just a shadow of what President Obama intended–literally, the bare minimum he could get through Congress. There are a lot of things wrong with the ACA, of course, and that is in large part because of the refusal of Republican lawmakers to work with Democrats during that time (and since). Some states were able to develop their own ACA-related programs to address the holes in the law, and some were not. So in many areas around the country, insurance companies have hiked rates because there is little or no consequence to them.

Ewokmama.com: Why we Need the ACA

Logistics of implementation aside, I want to make it clear that my support of the ACA is not about wanting free healthcare for my family. In fact, we don’t have insurance through the ACA programs. We have an employer-sponsored plan because we are lucky enough to be in good health and able to work. The unemployment rate is pretty low at the moment and my husband and I have pretty secure jobs (as secure as any job is these days).

With that said, the tenants of the ACA impact ALL healthcare plans. See this article for more on that.

When I use my family as an example of why we need the ACA, it’s because my family is pretty typical. Our circumstances are subject to change at any time, just as most Americans who don’t have a hoard of cash as a safety net. We are living paycheck to paycheck and have credit card debt and have experienced lay offs in the past. We have a house and cars, but those things could easily be taken from us if we hit hard times–just like so many other Americans.

There are many, many Americans who do not have employer-sponsored plans. Some are unable to work, perhaps due to illness or because they are caregivers. Some are self-employed or work with small companies that do not offer healthcare. Some have lost their jobs–most people I know have experienced a lay off at some point in their lives! The ACA is meant to help all of these people and prevent them from going into catastrophic debt from which they can never recover.

You can easily google “how much does cancer cost” and find out just how financially catastrophic that diagnosis can be.

And then there are those pre-existing conditions clauses. These do directly impact my family. My older son, a cancer survivor, is considered to have a pre-existing condition. That will never go away. He cannot hide it because he will need monitoring for the rest of his life to catch any other issues that cancer treatment causes. I have mild asthma and a history of mental health issues. My younger son has Reactive Airway Disease, which is often a precursor to asthma; he is only two–who knows what else will come up for him.

Prior to the ACA, even employer-sponsored healthcare plans could exclude us from coverage for periods of time. Prior to the ACA, and before I had employer-sponsored healthcare, I was denied private healthcare insurance due to a history of mild asthma and depression. I could not afford to pay for the medications to treat these health issues out of my pocket, so they went untreated.

When people cannot afford to take care of their health, that impacts their ability to work and be fully functioning members of society. Their health problems do not magically go away during that time!

Now let’s talk about hospitals. Did you know that if someone shows up in an Emergency Room, the hospital cannot deny them care even if they can’t pay? Some uninsured patients that show up in ERs are able to qualify for Medicaid (which, I might add, also doesn’t reimburse the hospital 100% for cost of care), but some are not. So many hospitals are taking on the cost of caring for uninsured or “under-insured” patients. If there is a large number of these people who need health services and cannot afford to pay for them, the hospital accrues large amounts of debt. The hospital has to then raise their rates for the rest of us to make up for the gap in operating costs.

And what happens if we refuse to pay those higher hospital bills? Well, in many cases those hospitals get shut down. This was a major issue for the Catholic hospital where I worked in rural northern California. It nearly shut down. Hundreds of people were laid off to keep it operating!

These issues snowball. Rural hospitals and facilities in debt have trouble hiring quality medical staff. The quality of care goes down. More mistakes are made and more lawsuits happen. People die, and costs continue to skyrocket.

This was happening in rural areas all over the country before the ACA. And these rural hospitals are still struggling due to key provisions missing from the ACA.

But if the ACA is repealed, it doesn’t fix any of these problems. We just go back to large numbers of people being uninsured or under-insured!

We need to fix the ACA. We need healthcare reform to hold insurance companies accountable–not a big gaping hole.

Please, call your representatives and demand they either KEEP THE ACA or develop SOME sort of bandaid in the mean time!

Why I Marched on Oakland

On January 21st, I marched in Oakland as part of the Women’s March on Washington. I know there are some out there who don’t understand what marching accomplishes. I don’t always know the answer to that, but sometimes you feel strongly about things going on in the world and you can’t sit there anymore and do nothing. Sometimes, marching just feels right.

It was a diverse group that marched in Oakland. It wasn’t only women; there were people of every color, size, shape, ability, gender, sexual orientation, and flavor. The reasons why participants marched were many and varied.

Jack and me at the march in Oakland. Photo © Rhea Avalos.

Jack and me at the march in Oakland. Photo © Rhea Avalos.

Here are the many reasons that I marched (with my son Jack) yesterday:

  • To show that I will not be a silent victim of Trump’s fascist agenda and toxicity.
  • Because every person who marches builds up a critical mass that results in 2.5 million people, which shows that we are not a small minority of people who are concerned with the dangers of a Trump administration.
  • To show support to every person who will be targeted and harmed by Trump’s agenda and toxic atmosphere for simply trying to live their life:
    • people of color
    • LGBTQIA people
    • women
    • immigrants
    • those in need of affordable healthcare and protections against pre-existing conditions clauses
    • children who deserve to go to school without worrying about gun violence
  • To feel solidarity with my fellow citizens who also want to build a better America–an America that is constantly improving and not trying to return to the past.
  • To be part of a movement so big that it cannot be ignored.
  • To show my children what freedom means.

I will keep marching because it means something to me and reminds me what it means to be an American.

Sharing Our Story About Pediatric Cancer

Saturday we attended the Grand Finale event for the Leukemia & Lymphoma Society’s Man & Woman of the Year campaign (Bay Area Chapter). Jack and Celia, the Boy and Girl of the Year, handed out the awards to the participants and the winners were announced. The grand total for the campaign was also announced – 10 weeks of fundraising resulted in $804,000 for the Leukemia & Lymphoma Society. Candidates who raised over $50,000 are able to directly choose a research grant to fund with that money. Pretty awesome!

I am hopeful that after my talks with some of the candidates, they are aware of the issues in childhood cancer treatment and will direct their funds toward those research grants.

Jack Boy of the Year

At dinner during the event, I sat next to the President & CEO of the Leukemia & Lymphoma Society, Dr. DeGennaro. He is a very nice man and it was clear he cares deeply about what the organization does. I took the opportunity to let him know what it meant to us to be part of the Man & Woman of the Year campaign, and also to emphasize that we need more focus on new, better treatments for kids (an area that is consistently underfunded). He said it’s one of the issues at the forefront in his mind (as well as prevention!), and that one of the challenges with getting new treatments for kids is that many in the medical community see the high survival rates (over 90% for ALL, for instance) and think their work is done.

Researchers, physicians, and advocates…we are nowhere near done. Cancer treatment for kids takes YEARS and it’s incredibly hard on the whole family. While the treatments usually work, they are not great – they cause secondary cancers, organ damage, learning problems, and other terrible (and sometimes deadly) side effects. Most of the time during Jack’s treatment, I didn’t worry about the cancer killing him – I worried about infection, which was statistically more likely to be a problem.

Friends, this is my challenge to you – please share our family’s story whenever you can. My wish is to spread awareness and hopefully get more funding diverted to childhood cancer research – for reference, only 4% of federal funding is devoted to childhood cancer through the National Cancer Institute. This is despite the fact that cancer is the #1 disease killing children.

Here is our family’s interview video that was made as part of this campaign. Please feel free to share it far and wide.

Note: I’ve read that if you donate to LLS, you can earmark the funds for pediatric cancer research by making a note in the memo section that states: RESTRICTED TO PEDIATRIC BLOOD CANCER RESEARCH. Additionally, for those who are donating at least $10,000 LLS says you can tie your donation to a specific research portfolio.

Boy Of The Year

I’m writing to invite Jack to become an official Honoree for one of our campaigns: the Man & Woman of the Year. Man & Woman of the Year campaign is a national ten-week campaign where individuals compete to raise funds to help find cures for blood cancers. Candidates run in honor of the Boy & Girl of the Year, who are local blood cancer patients and survivors and sources of inspirations to others. The Boy and Girl represent thousands of patients who have been helped by LLS’s patient services and research, they are recognized at all events, in campaign marketing materials and on the LLS website.

I received the above from the Leukemia & Lymphoma Society at the end of January. I wanted to speak with Jack before agreeing to anything, as I knew it could go either way – on one hand, he loves to be helpful and I knew he would get a kick out of being “Boy of the Year.” On the other hand, he doesn’t much like talking about his experience with cancer and sometimes avoids being the center of attention. When I sat down to talk with him about it, however, I didn’t even finish the explanation before he exclaimed, “I’ll do it!” He was thrilled to be given this opportunity and said he would attend events, give interviews, anything they wanted him to do!

So, we agreed to participate in the program and Jack officially became the 2015 Boy of the Year for the Northern California Greater Bay Area chapter of the Leukemia & Lymphoma Society.

Photos by Colson Griffith Photography - www.colsongriffith.com

Jack and the Girl of the Year (Celia) get along wonderfully! Seeing them together at the events, it’s clear that the LLS chose the right kids as honorees. They are both so full of life and sweet as can be. They absolutely hold their own at the events we’ve attended, and they stick together like they’ve known each other all their lives. The bond was immediate.

"Photos by Colson Griffith Photography - www.colsongriffith.com"

At the kickoff event we attended, I spoke briefly about our experience when Jack was diagnosed while Jack stood next to me and imitated everything I said. The crowd LOVED him.

"Photos by Colson Griffith Photography - www.colsongriffith.com"

I also mentioned the fact that when we found out Jack had cancer, the oncologist told us that ALL was “the best kind of cancer” to have. What she meant was that ALL is highly curable in children, but at the time this led me to think that maybe Jack would receive 6 months of treatment and then we could go on with our lives. That was so not the case (as you know) and so it was a second blow when I learned it would be more than 3 years of treatment. I emphasized this in my brief speech and I am emphasizing it again – this is why we need organizations like the Leukemia & Lymphoma Society and all of the research and fundraising! Three years of treatment is too long for anyone, but especially for children.

Maybe with the help of LLS, we can get to  a 6-month treatment for these kids – if we can’t wipe out this horrendous disease altogether!

"Photos by Colson Griffith Photography - www.colsongriffith.com"

“We need YOUR help!”

This is why this campaign – very hopefully named Mission Possible – is important and why we are very happy to be part of it and promote the cause to wipe out blood cancers. We hope you’ll support the cause, as well, by donating to the Leukemia & Lymphoma Society, attending an event put on by Man & Woman of the Year candidates, and/or by purchasing tickets to attend the Grand Finale event at The Fairmont in San Francisco on June 6 (we’ll be there!). By supporting LLS’s efforts, you are supporting families like ours – and like yours.

"Photos by Colson Griffith Photography - www.colsongriffith.com"

Note: photo credit to Colson Giffith Photography.

Let’s Talk About Measles

There is an outbreak in the US. And it’s in California. And, more specifically, measles are in the county I live in. Patients have been treated for measles at the hospital where Jack receives chemotherapy treatment, even.

I’ve been really good about not freaking out, even though I have every right to freak out. I have no explanation for why I am not coming completely unhinged as the news reports more and more measles cases every day.

Both of my kids are in danger. Desmond, at 5 months, is too young for the MMR vaccine and chemotherapy has wiped out Jack’s immune system – including many, if not all, of the immunities he used to have. Jack attends public school and Dez goes to daycare. Jack won’t be able to get the live virus vaccines (MMR & Chickenpox) until a year post-treatment – so, March 2016. Dez will receive his immunizations after his first birthday in September (at least, I think that’s the case – Jack’s health status may delay that!).

Until then, it feels like my kids are sitting ducks.

I know there is a debate right now about keeping unvaccinated (by choice) kids out of schools. I am not convinced we can require everyone to vaccinate, but frankly, I am not arguing against making it mandatory to attend public school – it would certainly make me feel better to know that Jack was that much more protected against a nasty disease that could kill him while going about normal life.

At the same time, I can see the case being made that immuno-suppressed kids be kept out of school, too. I mean, the measles could kill Jack. So why wouldn’t I sequester him?

How can I do that, though? How can I take more away from Jack? He has missed out on so much over the last three years. He has fought so hard to beat cancer and to live as normal a life as possible. He missed half of kindergarten and first grade and so many other days of school, and it has had an impact on his educational performance, as well as his self-esteem. I don’t want to take more away from him!

Further, he’s in danger at places besides school. When I took him to the oncology clinic a couple of weeks ago, we were advised to put a mask on him while in the elevator because there were measles patients being treated at that hospital.

It hadn’t occurred to me that he would be in danger at the oncology office, of all places! And, COME ON! It’s 2015! Measles has no place being on the top 10 list of things I worry about!

In any case, have you ever tried to keep a mask on an 8-year-old? It’s near impossible for longer than 20-30 minutes. And what about a drooling, grabby 5-month-old? That’s just plain crazy-making! (It’s a fun idea for a party game, though.)

So, what I’m saying is…I’m relying pretty heavily on those around me to keep themselves – and us – safe. I’m relying on herd immunity to protect my kids from vaccine-preventable disease because I am powerless at this point.

And, unfortunately, there are many in my community that don’t even think of my kids when they refuse vaccinations. Instead, they think measles is not a big threat to them. They think a vaccine is more dangerous than the disease itself.

All I can think is…is this real life?