My name is Beverly Alves; I’m an advocate for healthcare reform and the medical specialty of palliative care. I am deeply distressed by thelegislative nightmare surrounding healthcare in the US; the heartlessness of some members of Congress and the current Executive Branch, is appalling and destructive! I’ve renamed the AHCA the “American Healthcare Atrocity,” because that’s what it is!

 

Health and illness are part of the human condition! At the time of our great nation’s birth, all healthcare treatment was the same; there was no difference in healthcare between those with wealth and those without (everyone was given herbs and/or bled). The rich may have slept on feather beds and the poor may have slept on straw mats, but the healthcare they received was basically equal. Today, there is a difference, a great difference! Today healthcare is the difference between life and death, suffering with chronic illness and pain or having the meds and support to create a better quality of life.

 

I got involved in the healthcare movement shortly after my late husband Joe developed and passed from pancreatic cancer ten years ago. Until then, like most Americans who haven’t had to deal with a serious medical condition, I thought we had the best healthcare system in the world. That’s what we’re told! Sadly, however, this is not the case! Healthcare should be about health and healing, it shouldn’t be about making a profit!

 

Insurance companies use the term medical loss ratio to describe the money they spend on patient care. To them, money spent on our care is their loss! As a special Ed teacher who worked with disabled children most of my professional life, I say, “It’s okay, it’s even a good thing to earn a living working with sick and/or disabled people; it’s not okay to make a profit from their suffering!”

 

Although Joe had full medical coverage from Medicare and my job, I accept that Joe’s life could not be saved; his illness was catastrophic! However, the lack of coordinated supportive care caused him additional, horrific and needless pain and suffering. After Joe passed I started to write about the care I thought he/we should have received. I started to write about this care based on my experience as a special Ed teacher; I didn’t know it was called palliative care. A friend who was head of rehab at a facility read what I had written and told me that was what this care is called.

 

In looking for allies for palliative care I contacted PNHP (Physicians for a National Health Program); they referred me to John Conyers. In reading HR 676 at the time, I noticed that palliative care was not a covered benefit. I contacted Mr. Conyers’ office and amazingly, he put palliative care in his bill; his health LA at the time, even called to tell me.

 

Shortly after Joe passed I also learned that modern medicine is relatively modern; an elderly doc with whom I spoke, reminded me that antibiotic use did not begin until the late 1940′s and early 50′s. Before that time, if you had an infection it could result in an amputation or even death. (My own mom died at the age of 26, when I was a baby, from TB, an illness that is treatable today.)The ability to get healthcare can be the difference between life and death, between living with a better quality of life or suffering with needless pain and misery; therefore, I believe by definition, that makes healthcare a human right! In fact, as a student of history, I truly believe that if the medical advances we have in healthcare today were in existence during the time our Constitution was drafted, our founders would have included some provision for “Healthcare Equality.”

 

Whenever I use the term “Healthcare Equality,” most people say yes! Even people in my very rural Fulton Co., N.Y., even those who are very conservative, shake their heads up and down, yes! In fact, when people ask me how this care would be paid for, and I say by a single payer, they seem to be okay with this, as long as it provides Healthcare Equality. (For example, a man I know who is very conservative, proudly told me, “I have the best healthcare in America;” he said, “I have Medicare!”) He is one of the same people who voted overwhelmingly for Donald Trump. Trump is a master at labeling and messaging;those of us with knowledge and a caring heart, need to do messaging better! When given the truth, We The People need, We The People want, Healthcare Equality!

 

One of the other people I contacted shortly after Joe passed was Dr. Diane Meier, Director of CAPC (The Center to Advance Palliative Care) at Mt. Sinai; www.capc.org; we starting corresponding with each other. Dr. Meier was awarded the Medal of Honor from American Cancer and is a MacArthur Genius award recipient. Two years ago, she had me invited to speak at the National Academy of Medicine. I believe Diane asked to have me speak because sadly, Joe’s and my story typifies the stories of so many other patients and their families. She and I want to prevent what happened to Joe and me from happening to others. (See link below)

 

Panel 1: Perspectives of a Patient’s Wife – Institute of …

 

There were many wonderful medical authorities there who shared their expertise about the necessity for palliative care and how it should be administered in various situations. It’s interesting to watch some of these experts speak. The conference discussed the need to not only provide palliative care literacy for the public, but for the medical establishment as well.

 

Following is the Commentary written by Diane Meier and me.

<http://nam.edu/perspectives-2015-health-literacy-and-palliative-care-what-really-happens-to-patients/>

Palliative care is serious illness support! It should be provided at the beginning of a serious illness or injury; it can reduce pain and suffering, extend life and maybe, even heal or cure someone. Studies also show that palliative care saves money as well as reducing pain and suffering. In fact, palliative care is so essential that World Health passed a resolution calling for”all public health systems worldwide to integrate palliative care into their national health services.” Sadly, however, Sarah Palin, in her infinite wisdom, called this essential care “Death Panels.” Perhaps we should instead, call this vital care “Life Panels.” In addition to Healthcare Equality, we must provide comprehensive, coordinated and compassionate care to all!

 

Tony Back is an oncologist at the University of Washington and the founder of VitalTalk. Tony is the convener of the Care.Lab project, which was funded by the John A. Hartford Foundation. Diane, I and about twenty others were also participants of this Care.Lab, which used techniques based on “Transformative Scenario Planning,” (Adam Kahane). These techniques were developed to resolve the conflicts in South Africa, Columbia and other trouble spots around the world. “It’s an opportunity to shape the future of care for patients with serious illness in the US”… The question being addressed is “What could this group do to assure that every person who needs palliative care in the US gets it?” We are also working to improve language and messaging in the palliative care movement as there is much confusion and lack of info about what palliative care is. To me, palliative care is a coordinated, supportive IMP (Individual Medical Plan), for seriously ill people and their families/loved ones.

 

Currently in Congress, there are bipartisan bills, H.R.1676 and S.693, the Palliative Care Hospice Education Training Act (PCHETA) bills, which have been introduced to strengthen training for medical professionals who work with seriously ill patients and their families. Hopefully, these bills will be passed.

 

Years ago, when I was a freshman in college at Rutgers, my first psych prof., Dr. Arlene Tucker, a wonderful teacher, said something I thought was really important; it stuck with me throughout the years. She said that the human psyche was basically constructed so that we were concerned first with our own self-preservation, next our immediate family, our block, community, city, state and so on. It’s a survival technique! Perhaps that is why so many people are not concerned with, cannot feel the pain of “the other.” Some people may be oblivious to anything that they can’t, or don’t conceive directly impacts them; but no one knows what could or will happen to themselves or their loved ones, from one moment to another. Although some may live in ignorance, many of us live with hope and faith. So, to protect ourselves and also others, we could/should enact laws that would protect us all!

 

If I had the chance to speak to each legislator voting on healthcare, I would look them in the eye, and ask: “What would you do if someone you loved, your spouse, your child, your parent or your sibling were seriously ill and needed healthcare but couldn’t get it? What would you do if it were you?” Perhaps that would make them think!

 

In this great nation of ours we must ensure that everyone has “Healthcare Equality,” and can get palliative care if they need it. Joe always said, “Do the good in front of you!” I hope people will!


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