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Thursday, July 30, 2009

The Abuse in the Medical System

You may have heard me say before that there is abuse in the current medical system. I am often amazed at the caring citizens I see routinely defend this very broken system. They say: "No Obama-care for me. I like my doctor. I don't see any need for change. It will cost too much. Why should the government meddle in my business?" I wondered why would a caring citizenry take such a stance. When it comes to patients rights you even hear, "I won't say anything. It will only make matters worse if I disagree with my doctor."
A few nights ago I was speaking with the former wife of an alcoholic. As the child of an abusive alcoholic, I could relate to the conditions she described. We were amazed at the parallels between the current outcry against health care and the coping strategies used in an abusive home.

It is not really happening. Many families use a form of denial to live in abusive relationship. They pretend to everyone around them it is not that bad, ignoring the elephant in the room. Saying, "We have a good medical system," these individuals ignore the under staffing, the unhygienic practices, the lack of consultation, the inefficient paper work and the lack of access to patient information. They are so frightened they can see no other option of how to live than their current abusive lifestyle.

It will cost too much. I have known many women in my life who have stayed with abusive husbands because of money. "It will cost too much to leave him. He has the job. He could get the house and the kids." I always council people that the emotional cost is far greater. Imagine the harm to your mind and soul and to that of your children. When a situation has become abusive it is your duty to stand up and make things right. Now, as a nation we are making this choice. What is the harm we inflict to our national soul if we stand aside, and because of money, allow abuse to continue?

Why should the government meddle in my business? The government meddling is called regulation. Regulation can be a very good thing. It has lead to clear nutrition facts labeling, the clean air act, required seat belt use, and other amazing laws that save lives every day. We used to live in a world where it was okay to beat your spouse and kids. Go further back and it was okay to whip your servant. It is now against the law. The law of the land can change things for the better. I am not for big government. I am for best government.

It will only make matters worse if I say anything. We need immediate and real-time access to our medical record. We need this so we can speak out about what is going wrong and take ownership of our medical situation. We need patients to feel empowered to know that their thoughts are valid and they will not be penalized for speaking out. We need patients who will keep talking till someone listens to them. The abused child will often tell more than one adult about the abuse before he is believed and someone acts on his complaint. Patients and caregivers need to bravely step forward again and again to talk about the abuses in the health care system.

It is very hard to break a cycle of abuse and neglect, but it can be done. We must all step forward and say this must stop. We will not allow it to continue.

This quote from the Declaration of Independence is part of the mural I am now working on:"Experience hath shewn, that Mankind are more disposed to suffer, while Evils are sufferable than to right themselves by abolishing the Forms to which they are accustomed."

What does this mean? That we should so fear and dread change, that we accept the current health care system? I think not....

Saturday, July 25, 2009

My Post to Lotsa Helping Hands Community: Regina's Friends

I am sending this out to all the wonderful people who helped our family through our ordeal for the past four month, but I thought I would post it here as well as I think applies to most of you as well.

I want to thank you for all the help you have provided for these past four months. We could not have done it without you. You have been great. Some of you have asked "Is there anymore we can do?" There is. Help me with my fight for health care reform. You can reach me at or http://ReginaHolliday.Blogspot or Regina Holliday Washington DC on Facebook or ReginaHolliday on Twitter.

If you would like to host play dates while I paint advocacy murals or speak with our representatives on Capitol Hill let me know. If you know a reporter who would like to talk about how bad our current medical situation is, give them my contact info. If you have a medical story to share with me about a tragedy that occured in your life please contact me; because I will be doing more murals. Fred's story is not the only one out there. The time to ignore what is happening is over. The time for action has begun.

Reform does not happen overnight, but it will happen. I plan to dedicate the rest of my life to making it happen. I will campaign for patients' rights. I will work hard so no other patient will be virtually imprisoned in his hospital bed. I will demand access to the medical record in real time so patients and caregivers can make informed decisions. I will work toward the standardization of forms so patients will not be unnecessarily harmed due to lack of awareness of medical staff. I will implore medical facilities to adopt an interoperable Electronic Medical Record so you do not lose data upon transfer and so patients do not need to wait for several hours to get their meds back on-line. I will paint murals throughout this city about the ones we loved that died. I will speak to senators and congressmen about the need for affordable insurance.

I will not stop talking until we get change. And if you know me from Child's Play you know I talk a lot. You also know I care about your children and I want what is best for them, whether it is a great toy or good health system. If you know me from teaching art, you know I don't do things by half measure. There is no project that cannot be accomplished if you have dedication, time, and work hard. If you know me from church, you know I believe in God. I believe in a God of mercy and grace, one who says we must help the "least of these." People ask for a miracle in their time of sorrow. God is there all along trying help us listen to His call. The miracle is in us, and it is up to us to do everything we can to help the sick, the tired, the dying, and those filled with sadness and despair. I will do everything I can to help and I hope you will join with me.

I have been blessed by this community of friends. I am sure together we can do great things.

Thanks again for all you have done,
Regina Holliday

Thursday, July 23, 2009

Today I went to a press conference hosted by Senator Reid. We spoke of the great need for health care reform. I shared the experiences Fred and I had within this very broken system. Our son Freddie was also present and provided emotional support. I am posting my comments here:

"When I met my husband of fifteen years he had a dream. He wanted to teach film studies at the university level. He went to school for many years and got his Phd. My husband Fred Holliday soon became Doc Holliday. He began to adjunct at many universities and worked as a video clerk. I worked at a toy store and taught art. When we were not working we cared for our two children; three year old Issac and ten year old Freddie. In the 2007/2008 school year My husband and I worked five different jobs between the two of us and still could not afford family health insurance.

n August of 2008, My husband's dream came true. He was hired by American University to teach film studies. He was so happy. He was such a great teacher. Now, we could finally afford family insurance. In January 2009 he began going to the doctor because of pain in his chest. In February the pain went to his back. He no longer could carry his books and papers to the classes he taught; so he began using our son's rolling backpack. By March the pain was so severe we demanded an MRI.

On March 27 at 11:00 am my husband was diagnosed with Metastatic Kidney Cancer. He was in stage four by the time of diagnoses. My husband was hospitalized at five different medical facilities in a three month period. He suffered through 40 ambulance transports to receive radiation, had repeated and unnecessary tests, routinely had delay in pain treatment due to lack of data access during transfers. After suffering in a health system more concerned about quantity of care over quality of care, Fred died on June 17th at the age of 39.

Would access to an affordable family insurance made a difference in our case? I think so. If my husband could have seen a primary care doctor throughout the past ten years there is a very good chance this cancer could have been caught before stage four. If there had been consistent follow up to the ER visits we have made as an uninsured family, I think some one could have looked at all of his symptoms in combination and ordered the tests that would have discovered the cancer. If an electronic medical record was in place that could have followed my husband from ER to health clinic to specialist, a red flag could have been raised that this patient needed more treatment.

My husband was a dreamer. He dreamed he could make the world a better place by being kind and thoughtful. Our current medical system with insurance tied to a job makes it very hard to be insured in many professions. The time has come to make hard choices. Do you want a world without musicians, artists, actors and teachers? Do you want to give up on dreams? Or do you want do everything in your power to fix a very broken medical system? I know this is very hard time for many people. The economy is bad, things are uncertain; but that is no reason to turn away. If we all work together good will come of this. My husband did not die in vain. We will change things."

Go and spread the word. The time for change is now.

Tuesday, July 14, 2009

DC Fox 5 interview

I was interview by DC Fox 5 news today. They showed the mural as well as asked me some questions about health reform.

Friday, July 3, 2009

The Last Time I saw Elika

I want to post a poem I wrote while Fred was hospitalized.

I was blessed to know a wonderful woman named Elika Hemphill. I helped her at Child's Play the toystore for many years. I was so excited to see her become a involved parent at my son's school. I watched her fight her first round of cancer while taking care of a family. When she went in remission she came by the store one day and asked me to paint a mural of her children's faces on her fence just like my work at American City Diner. I said I would as soon as my schedule freed up. My schedule did not free up in time for Elika to get her painting. She came in the store on June 25th 2008. She was in a hurry, but I asked her if she would like to enroll her children in the art lesson I was teaching the next day. She said yes. She came even though she had received devstating news. Her cancer was back. She died in the fall of 2008.

Here's to Elika and Fred.

The Last Time I saw Elika

The last time I saw Elika,
Sunlight-Shining Elika,
She sat on the bench and looked away
And as she sat her children played.
They painted cherry blossom scenes
And she looked upon them in between.

The day I heard, oh Elika,
Michelle told me, oh Elika
The cancer's back and now has spread.
It's gone through her. It's in her head.
Oh no...Oh why? This isn't fair!
But these thoughts, I did not share.

Why not go see Elika?
I could not go see Elika.
I could not bear to think
Her face not now so rosy pink.
Her sunlight-shine begun to fade.
And all the hope is now forbade.

Each time I thought of her I cried
Like some part inside of me had died.
Maybe my heart already knew,
My crying time was coming soon.
That my sunlight-shining day would end.
That I would lose my greatest friend.

She knew she'd die that painting day.
She knew, and she came anyway.
Because it's worth it one last time
To see the sun, to paint, to shine,
To be with children and to show
How much you love them as you go.

-Regina Holliday 4-7-09

Wednesday, July 1, 2009

art as advocacy

Art as Advocacy

On May 17, 2009 in the Washington Post Magazine Deneen L. Brown, in the article "Of Bricks and Beauty", wrote "...Murals have the same claim to your attention. They are telling you that although you may be pulled by your collar on your way to work, or stopped at the red light for longer than you need to be, or stressed by a spat with a friend, there is something bigger than the mundane...Murals vary in artistic quality and intent. But they all shout their belief that art should be writ large across our lives, not stuffed away in books and museums."

This is a wonderful article on why murals are important. They wake you up. They provide beauty in an often bleak urban environment. They are public and open and uncomprimising. "See me", they yell. "You cannot ignore or quiet me. You cannot pretend I do not exist."

This past week I began 73 cents at 5001 Connecticut Avenue. It is a tribute to my husband and to all of the other patients, caregivers and families who suffer in silence. I could not wait to paint Fred's face. He is on a wall now. He is there on Connecticut Avenue with me. His eyes are closed, and he is resting. His beautiful eyes will not open as he lost to me physically, but his spirit is there. I painted Issac older than he is, as Fred was most concerned that he "would not get to see him grow up." Issac plays with the blocks that spell EMR, ARRA and HITEC. He holds the letter "I" as this painting asks members of the public where they stand in the current debate. I am two-faced in the painting. I had two roles: wife and caregiver. My wife face is a mask covering my sorrow. My caregiver face clearly screams my despair and worry. The 73 cents at the bottom of the mural represent the cost per page for the medical record. At this point only 1/20 of the mural is done. It will cover the entire wall, approximately 20x50 feet. I will work on the painting throughout July and hope to be done by the end.

A few days ago I attended the Connect 2009 seminar. The conference was filled with goverment agencies, Health IT professionals, health adminstrators and health advocates. I had an opportunty to ask a patients rights question in front of the assembled. To paraphrase:
"On March 27th My husband was diagnosed with renal cell carcinoma. I began to use the internet to research the disease. Posted daily on facebook to ask for help from friends. Learned to twitter and contacted a renal cell expert in Boston. I used every technology at my disposal to help my husband. How are you addressing a patient/caregiver access to the EMR?"

My question received applause. The answer was basically that patient access is not part of the current agenda.

I am doing everything in my power to change that.

-Regina Holliday

The Medical Facts mural is finished and on permanent display at Pumpernickels Deli on Connecticut Avenue.