WE THE PEOPLE

To idealize a superhero is exciting. Someone who will show up and save the day when things go badly. My favorite superhero is The Flash. I like to get things done and the idea of super speed is enchanting. I would like to think that if I was ever in a burning building, The Flash would come and rescue me, my Prince Charming. Today, I cannot rely on The Flash, I have to rely on myself. I must remember myself and my superpower. The Flash can reach terminal velocity, but I am able to choose bravery.

With age I have realized that my destiny depends on more than just me. I was born with a rare genetic condition. Throughout my life I have had twenty surgeries. Nine of these surgeries were major brain surgeries. My education, my healthcare, it all depends on the government I live in and how they want to manage my healthcare.

When I was nine years old, Barack Obama was elected president. The message back then is a lot different than the message now. In 2008 there was hope and now there is fear. In 2008, there were parades celebrating the new president, now there are marches against our new president. When discussing healthcare of Americans, I do not believe that is a party issue. I do not believe that there is Democrat vs. Republican stance on this issue.

Disease kills, no matter what your party affiliation. 

I have been sick for a very long time. When faced with the choice between John McCain and Barack Obama in 2008, there was one thing that made Obama stand out in my families eyes: The Affordable Care Act.

I have been confused by the arguments made against the affordable care act. There is a general misconception of what the act actually is and what it does.

There are facts and there is fiction.

Fact: President Trump delivered a motivational speech inspiring Americans to believe in their government when he explained the speciality of his inaugural address.

“Today’s ceremony, however, has very special meaning. Because today we are not merely transferring power from one administration to another, or from one party to another — but we are transferring power from Washington, D.C. and giving it back to you, the American People.”

Fiction: To say that the new president wants to kill citizens is largely unfair.

“The establishment protected itself, but not the citizens of our country.” 

Obviously, he wants to help the American people.

Fact: This study released in The New England Journal of Medicine shows how many people will die if the Affordable Care Act is repealed. 

Fiction: President Trump never said he planned on allowing his administration to flat out murder 43,000 people.

There is fact and there is fiction. If the Affordable Care Act is so great then why is there even debate about it? The answer can be uncovered by examination of (you guessed it) fact and fiction.

What is the Affordable Care Act? 

Please visit the official informational website for clarification. 

The Affordable Care Act was set up as a long term solution to the healthcare problem in America. This is a big problem for such a short sentence…

Currently, New Mexico has the best state insurance pool. The Huffington Post did a extensive overview of the cost of healthcare throughout the United States. The quality of insurance to be offered throughout a state depended on that state’s government.

New Mexico ranks at number one for lowest health care premiums. One major disadvantage about the affordable care act is that your insurance premiums were really just based on luck.

What is the difference between Obamacare and the Affordable Care Act?

When I heard that this was a misunderstanding my mouth dropped open. I am so sick and tired of the Affordable Care Act being referred to as Obamacare. The act was not even Obama’s idea.

It was originally proposed by Republican Mitt Romney. When his wife Ann was diagnosed with breast cancer and MS, as Ann said herself, the couple “became more understanding of others.” 

It was for this reason she and her husband passed the healthcare law MassHealth which has been dubbed by the locals as Romneycare. I am immensely thankful that I live in Massachusetts because the state had already adapted to the sort of changes the Affordable Care Act brought forward.

What is all this complaining about? 

A recent study revealed 46% of adults decided to remain uninsured because they could not afford their premiums. Although those with chronic illness don’t have this luxury of choice, they are still burdened with the responsibility paying their insurance premiums, which are painfully high. Insurance prices are through the roof and unaffordable. Middle class families are the most vulnerable to this as they do not qualify for subsidies. There is also a debate regarding small businesses having to provide insurance for employees and a fee, which must be paid to the Federal government. 

However… 

Doctor’s desperately want government officials to understand that the Affordable Care Act, has improved healthcare for Americans. Before it was people either get medical coverage or they die.

Doctor’s such as Pradeep Chopra an expert in pain management state “The Affordable care act has made a huge difference in preventative care. It has provided healthcare for patients who otherwise wouldn’t have it.”

What can lawmakers do to fix this?

If you have ever seen school house rock, you know that it is much easier to amend a law than to repeal it and write a whole new one from scratch. 

It is obvious that Republicans and Democrats do not like each other, but they need to find a solution together. I am more than willing to meet with any lawmaker who is willing to reform healthcare.

My plea for help: 

I have been told again and again to give it up. The cause is not worth my time. I will be just fine. I will not take a back seat in this fight. The Affordable care act cannot be finished. Because if the Affordable care act is finished, it means that I am locked in a burning building. It means that I was born only for the chance to die. Because I am one of those numbers in the New England Medical Journal. 

Anyone who says the affordable care act should be flat out repealed, is suggesting that I do not deserve the right to live. The Affordable Care Act is 1,000 pages long and consists of 10 acts. These ten titles include… 

Title I: Quality, affordable health care for all americans. 

One of the most common misconceptions about this act is that it will force you to change the insurance you have even if you are happy with it. That is simply untrue. This act reduces premiums by providing government money for insurance agencies. It also reduces out of pocket expenses by capping them. Every year around March, my family meets our deductible. Once we have met the deductible, the insurance company is required to pay the extra “out of pocket” coverages. This means thousands of dollars are billed to the insurance company rather than my parents.

The insurance is provided to people via a pool of insurance companies. The hope with this was to make the insurance companies better. People choose their insurance based off of the cost and quality.

This act also provides rules that the insurance companies have to follow. For instance, if I need a life saving surgery that is extremely expensive, the insurance company cannot deny it. They can argue against it, but they can’t flat out deny it.

Title II: The Role of public programs. 

This act provides for home care services to be provided for families who have long term healthcare needs at home under medicare and medicaid in all states. This act was set up for less equipt states in the hope that people could get the care they needed in their home state. The secretary of Health has the authority to work with all states on these laws.

Title III: Improving the quality and efficiency of health care.

This act ensures medicare to seniors once they retire. Closing something called the “donut hole” meaning that there is less of a coverage gap and senior citizens are not throwing money towards their helath care. The part of this act that I appreciate the most as a patient is the fact that it calls for treatments prescribed for the patients by their doctors rather than members of congress. In the end, it should be the patient and doctor’s decision what medication you receive.

Title IV: Preventing chronic disease and improving public health. 

This aspect of the affordable care act provides funding to research areas that will help in preventing chronic disease and improving public health. Say that a flu pandemic breaks out tomorrow, government money will be in place to find a vaccine for that deadly disease. This is so important for maintaining a functional and healthy country and should of course continually be funded.

Title V: Health care workforce. 

This part of the act funds scholarships for future doctors, nurses and health clinicians in areas where there are better resources needed. This part of the affordable care act is meant to help the nursing shortage that America is facing.

Title VI: Transparency and program integrity. 

Personally, this is one of the most important parts of the affordable care act in my eyes. The act requires that all available information be made available to patients. I have had risky surgeries, taken scary medications, but I have all done so with consent and knowing the risks that they posed to my health and general well-being. I did not go blindly into these decisions.

As a young child, I was abused in a hospital program. Had the Affordable Care Act been law back then, my parents could have sued the hospital for what they did to me. All these years later, it actually doesn’t matter what happened to me. What does matter is how it should not happen to anyone.

I am on multiple psychiatric medications for Anxiety and other stress related disorders. I do not believe in blaming one’s misfortunes on others, but I do believe that I have suffered a great amount of misfortune due to the lacking knowledge and care of doctors. Doctors need to be held accountable for a child’s life. If they cannot be held accountable, then they should simply not be practicing medicine.

I lost so many days because doctors performed the wrong treatments. I watched my friends play basketball when I was sitting on the sidelines in a body cast. I have had twenty surgeries to keep me alive. The emotional trauma that results from misdiagnosis is prevalent in the chronic illness community. Richard Barnum a psychiatrist practicing in Massachusetts stated: “I have seen many patients experience significant emotional trauma as a result of being misdiagnosed with a psychiatric problem when the underlying difficulty was an undiagnosed physical condition.”

I have noticed a difference in hospital care since the affordable care act was established. While we used to be forced to go to our local hospital and our local hospital only, we are able to see the doctors who understand my rare diseases. When I was misdiagnosed in 2010 with a psychiatric disorder, I spent each day in a wheelchair. I spent each day having seizure after seizure. I lost two months of my childhood due to the incompetence of doctors and I will never get those two months back.

In 2014 this happened to me again. I was having severe headaches and I needed a special test that would require hospitalization. An ICU attending suddenly decided that there was nothing wrong with me and I did not need any kind of testing. She took me off all of my medications and sent me home. A year later, I was in tears when the doctor told me my entire Left Internal Jugular Vein had clotted off and there was nothing that could be done. Here I was, lacking this essential source of blood flow that had clearly been beginning to clot at the time the attending told me there was nothing wrong. If she had acted then, if she had acted properly, my life may be very different.

Although the loss of a Jugular vein was greater than the loss of a few months, there was one major difference between what happened to me in 2010 and what happened in 2014. The ICU attending who had caused this medical catastrophe was reported to the Massachusetts board of health and scheduled for a hearing. I am not sure what happened to her, and to be honest I don’t really care. She was held accountable for her actions thanks to the affordable care act. The Affordable Care Act protects your rights as a patient and as a human being.

Title VI: Improving access to Innovative medical therapies. 

This act promotes drug research funding for hospitals in low-income areas. It also provides doctors with affordable alternatives to expensive treatments. Sometimes there is no alternative, but Title six of the affordable care act funds the research for that alternative solution.

Title VII: Community living assistance and supports. 

This act supports financing long term support when someone is permanently injured. This way they and their family can receive long term care for whatever health care needs they may have. This is self-funded and voluntary long-term health care plan. In a way it is like social security, but specifically for healthcare. The program actually reduces medicaid spending rather than increasing it.

Title IX: Revenue provisions. 

This section of the Affordable care act makes it possible for Middle Class families to pay for insurance. I recently had a discussion with a family member who said that her insurance was so expensive she may as well pay for her surgeries. While currently this may be true, in the next ten years, statistical analysis has shown that this act will completely help to pay for healthcare and will reduce the deficit spending by more than one billion dollars.

Title X: Reauthorization of The Indian Health Care Improvement Act. 

This part of the act provides that Native Americans can also receive insurance coverage because before, they couldn’t.

Just to recap…

The great things about this law are… 

  • The Affordable Care Act ended all exclusions of coverage for children with pre-existing conditions.
  • If you are under twenty-six, you can be covered under your parent’s health plan.
  • It ended arbitrary withdrawals so insurance companies cannot just drop you.
  • Gives you the right to appeal. If you do not agree with the insurance company’s denial of coverage you and your physician can appeal their decision to deny you coverage.
  • It ended lifetime limits of coverage. I would have outspent them a while ago.
  • Insurance companies have to justify why they are spiking their rates.
  • It allows you to choose your doctor.
  • It removed the insurance companies barriers of emergency services.
  • I understand that The Affordable Care Act began as a democratic bill, but I am begging the senate and congress to protect it as if it were their own. I understand that there are issues with the Affordable care act. I have done a lot of research into the bill and what it does. The Affordable Care Act is my life. It is the lives of so many.

When I wake up in the morning I make various different noises as my feet touch the soft carpet. I must have something to live for or my feet would not touch the soft carpet in my room. As I throw my alarm across the room because it is annoying, I have a reason to go on.

I look forward to seeing my friends at school. I look forward to telling them the list of jokes I have prepared in my head. I imagine them looking at me confused when I tell them, and  I accept that they probably will not laugh. As I put on my makeup and my clothes, I am completely independent of the world. I am just a girl who is getting ready for her day.

Some days, seem harder than others. When I stay in bed and cry because I am in so much pain I cannot possibly think straight.

Although my situation is bad at times, I know that it could always be worse. I have been given all the tools I need in this life to thrive and grow into a prosperous young woman. If I am expected to respect this nation and it’s democracy, I expect this nation to respect me. America was built off of the hope that everyone could be successful as long as you try. The affordable care act provides me with a tool. It provides me with a chance to receive the health care I need. To deny me of this right would be denying me the opportunity to be an American. I am willing to meet with any senators and congressmen and discuss the pros and the cons of the Affordable Care Act.

I truly hope that our incoming president along with his administration are respected, but I also hope that the incoming president can respect those with disabilities who rely on the affordable care act. I am just a girl trying to live my life. I am choosing to write this, not because I have the time, but because I feel as though my rights may be threatened and I am scared.

I have had one insane journey and a lot of the life-saving medical care I received was made possible by the ACA.

This mother (Stephanie Pressley) and her daughter (Jennifer Pressley) attended the women’s march in Maryland on Saturday to express their concern for women’s healthcare rights. 

“My daughter fresh in starting her career in medicine, graduate from Penn State said this march was important for her because the fundamentals of financial and healthcare opportunities for women are at risk right now.”

This daughter who has suffered from brain Brain aneurysm also has two chronically ill parents who depend on healthcare coverage. 

 

“This is my reason for being for the ACA. My parents. This picture was from a few years ago when my father graduated with his associates degree. My father went back to school to be able to get a job that wouldn’t be so rough on him. He ended up dropping out just before graduation with his bachelor’s degree, because my mother got sick. She was admitted to the hospital after getting pneumonia for the fourth time in just six months, combined with asthma. She is now disabled and is on oxygen. Her lungs only function at 40%. My father is now disabled as well, from COPD , heart, and vascular issues in his legs.
Without the ACA, my father’s prescriptions cost roughly $1000 for just one month. Who knows how much my mother’s big concentrator, her portable concentrator, breathing treatments, inhalers, and prescriptions cost each month without the ACA.
I need the ACA as well, between Ehlers danlos and brain aneurysms, I don’t think any insurance company is going to want me or pay for anything for me because of pre existing conditions.
The ACA is very important for many people with pre existing conditions. It can be very hard to get insurance with pre existing conditions, or if you do get it, it can be very hard to get approved for any tests or treatments for those pre-existing conditions.”
Sara Hatcher

 

 

Emily Ladau makes it clear that disability rights, are women’s rights, are human rights!!! 

Follow Emily Ladau on twitter for more! 

 

 

This mother took the oath of being a wonder woman for her daughter. They went out and protested together for equality in education. Kids with disabilities deserve equality in every aspect of their lives! As it is basic human rights.  

I attended the March in St. Louis which I’m proud to say was 20,000 strong. I went with my mom, sister, a good family friend, and my daughter. It was amazing!
I have to admit this was my first Protest. I have “stood” with people in varying social issues from afar- posting articles hoping to reach ignorant family members and friends on Facebook. I have helped people through gofundme anonymously when I can. I have written letters and signed petitions. BUT I have never physically put myself out there because I’ve been afraid to. I just knew this march was the place to start. This would be the march to help me realize that I should be out there helping more instead of just researching and sharing words; I need to put my thoughts into action.
There are so many issues that I stand for but one that does hit close to home for me is education. I found my calling in education; working with children is where my heart is. And almost 5 years ago my daughter was born; she was diagnosed with Williams Syndrome. She is our little Wonder Woman- she is the sweetest, silliest little girl you could ever meet with the biggest heart. She passes every goal and expectation we set for her and we are always amazed. I stand for education for her and my two boys but also for all children. It is a right to have access to quality education no matter where you live, how much money you make, what ethnic background, or what abilities you have.
I can’t even put into words how mad, disappointed, and disheartened I get with how Education is treated in the political world. I don’t even want to get started on DeVos… ugh. My ten year old son stated, “education should be the most important thing, it’s where we start”. He gets it, why can’t they.
I pledge from now to continue to keep up my posting, discussions with my children, teaching social justice, empathy, and compassion to my students, and to not be afraid to step out of my comfort zone and stand physically with you.
I promise to be a Wonder woman for my daughter. ❤
#wonderwomenunite #wsa #williamssyndrome”
Savannah Hanak

Please learn more about Williams syndrome and how it affects families. 

 

Wonder Women Unite!

 

Ali and Cheryl were stuck at home this weekend as Ali has not been feeling well. Although unable to attend protests, they stand for equal rights! Here is a picture of them biting down on limes for lime-disease awareness. 


The ACA is important to anyone especially people who are not rich and particularly for those who are disabled or chronically ill. Ali has crps, eds, pots, Cci, IH and now gastro issues. I do not know how we could afford her endoscopy next week or her stabilization n fusion surgery in June without it. We would go broke without good affordable health insurance. Every American should receive affordable quality health care-this is America! We are a great country and should have this protection for all citizens❤️

Cheryl Myers 

The sick chicks attend the Women’s march in Orange County. Making sure that the presence of the disabled community is remembered and recognized. 

“Access to health care is a human right and this impacts everyone. As I always say, health is not guaranteed, so throw your stones at Obamacare, but if your child (or yourself) was sick, you’d want these key pieces to be in effect.” Shira Strongin

This little boy represents what we all want, equal rights for his sister! 

Photo from Claire Cordell
“Women’s March Sacramento. My amazing 9-year-old son marching for the rights of his little sister who has Down Syndrome.
Feel free to repost.
#WomensMarch”

 

Mary Anne marching in Dallas Texas to remind everyone that women’s rights and the right’s of the disabled ARE NO JOKE.

 

Candice is in her twenties and suffering from a rare genetic condition. On her good days she looks like this… 

But on her bad days… 

 

But Candice will never give up and continues to pursue her passion for being a yoga instructor. 

Emily Doyan suffers from multiple rare diseases.

WE 

THE 

PEOPLE 

OF 

THE 

UNITED 

STATES 

OF

AMERICA 

WE DESERVE THE RIGHT TO BE HEALTHY, HAPPY AND PROSPEROUS. 

I DESERVE TO LIVE LAUGH AND LOVE. 

I DESERVE TO BE RECOGNIZED AND HEARD. 

I DESERVE THE RIGHT TO LIVE THE LIFE GOD HAS GIVEN ME. 

THIS IS A FIGHT FOR LIVES, NOT POLICIES. 

THIS IS THE TIME FOR CHANGE NOT GAMES. 

This is a photo of my pain doctor and me. This morning I walked into his office and said, “the affordable care act is not going anywhere.” 

2 Comments on WE THE PEOPLE

  1. People are so ignorant. And jackasses. This march was paid for by planned parenthood and George Soros. You are listening to propoganda and don’t even know what you are fighting for wisely. I have a very rare disease and am concerned. But am not an idiot supporting bleeding pussies as a way to save my health ….that was not a fight for health by Ashley Judd and when Madonna said Blow up the White House. If you believe in that violence then you should be reported to the FBI also.

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