Category Archives: Discrimination

#MillionsMissing Protest Coverage

 

Sept. 27th was a day of national and international protesting and recognition of #millionsmissingME, myalgic encephalomyelitis, is a greatly disabling, debilitating disease.

ME has been pushed to the sidelines for several decades by the HHS, CDC, NIH and governments around the world, as a figment of the patients’ imaginations.  The patients have been insulted with taunts and accusations that they are not really sick. Far from the truth.

We, advocates and patients who are able, must continue to make our voices heard.  We need more research and granting of funds by National Institutes of Health to continue and advance the research that has already been started by non-profit organizations with private donations.

We have lots to do to catch up and make up for the time lost and the lives lost along the way.  Millions are counting on the world to wake up and recognize ME as a devastating disease to the patients and families.

Please take a look at the site below to familiarize yourself with ME and what is being done to bring it to the forefront in the eyes of the world.

Protest Coverage

 

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The Election Isn’t The Only Thing On My Mind

 

At the top of my priority list is my daughter.

It was about 25 years ago, that she started noticing symptoms of loss of stamina, unusual tiredness, lots of pain, and seemed to be fighting low-grade flu-like symptoms every so often.  They were the types of feelings that we all just dismiss (was I really feeling so bad?) and go on with our lives, hoping those body signals of something “just not right” will go away.  And, to a point, they did, and no more thought was given.

But, every so often, they were there again.  Most times, they were almost unnoticed; other times, enough to force her to go about her daily activities of caring for her children, working full time, being a thoughtful, responsible person, by “pushing through” those symptoms, and then just falling into bed, exhausted.

This went on for so many years until about 15 years ago, when she was already living close by in Florida.  She came over for dinner one Sunday, with her then husband and her two daughters.  They arrived in late afternoon, before dinner time, and she told me she needed to lie down.  She was completely exhausted and just had to go to bed.  It was like an emergency, and I hurriedly prepared the guest room bed for her, and she practically fell into it as I closed the blinds.  She couldn’t move; and slept very soundly for hours.  When she got up, she didn’t feel refreshed, but she was able to dine with us and then they went home right afterwards.  It was from that point, that the symptoms would become more frequent and noticeable.

Going to work was and is not an option as of this past January 2016.  She really should have stopped work at least a year before.  Looking back, she kept up her pace with great difficulty because she was a single mom and her younger daughter was totally dependent on her, and she worried about finances.  She was living a physical, mental, stressful nightmare.

My daughter suffers with the disease that is the reason for the letter below which is circulating in the House of Representatives on behalf of MillionsMissing (a global movement for health equality) and is addressed to Dr. Francis Collins, Director of the National Institutes of Health.

Francis Collins, Director
National Institutes of Health
1 Center Drive, Room B1-126
Bethesda, Maryland 20892-0001

Dear Dr. Collins:

We write to thank you for your attention to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and encourage you to continue to strengthen the National Institutes of Health’s (NIH) efforts in ME/CFS biomedical research.

As you know, ME/CFS is a complex, debilitating, and chronic disease afflicting 1 to 2.5 million Americans. It costs individuals, the U.S. health care system, and our economy an estimated $17-$24 billion annually. Yet, as the Institute of Medicine noted in its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments.

A number of us sent you a letter in March of 2014 to express support for ME/CFS research and are heartened by your commitment to advance diagnosis, treatment, and a cure for ME/CFS through a reinvigorated Trans-NIH ME/CFS Working Group (Working Group) housed within the National Institute of Neurological Disorders and Stroke (NINDS), and new intramural and extramural research programs that will bring new investigators into the field.

We encourage the Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training. We also ask that you provide us with the current status of this planning effort and the specific intramural and extramural activities planned for the rest of FY 2016, 2017, and 2018.

Thank you for your attention to these critical issues. We look forward to your response.

Sincerely,

Zoe Lofgren                           Anna G. Eshoo
Member of Congress           Member of Congress

The U.S. House of Representatives is currently circulating the letter asking the NIH to strengthen ME/CFS biomedical research efforts. NOW, is the time to contact your representative to ask him or her to sign the letter.  Representatives have only until Wed., Aug. 31 to agree to sign the letter so action must be fast.

Here is a “Prevalence of Well-Known Diseases” comparison chart by state, which compares the number of people in each state that suffers from ME, HIV/AIDS, Parkinson’s (PD), and Multiple Sclerosis MS).  Myalgic Encephalomyelitis (ME) is quite short-changed as far as NIH funding, research and timeliness is concerned.

The following websites will be helpful if you had or will contact your U.S. Representatives:

http://www.meaction.net/wp-con tent/uploads/2016/08/Script- and-How-To-1.pdf

https://drive.google.com/file/ d/0B8cZyk4UDCJkQkhfWHJRbU1BZlU /view?usp=sharing

https://docs.google.com/forms/ d/e/1FAIpQLSd3mTxetR874PxJjDA1 AwLDPna9fSNcaKoIx- YnldwGxEerCA/viewform?c=0&w=1

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Orlando FL: Target of Terror and Hate

flag

Photo from Bingdotcom

Our flag has been ordered to be at half mast by our president; also, flags should be lowered at all embassies around the world.

It has happened in many sections of our country and in so many cities around the globe.  Now, it has happened on my personal “turf.”  Florida is my home state and became that from the moment I drove over the border from Georgia.

I take this personally.  Two and a half hours away, but close enough.

pulse

Photo courtesy of CNN

And we have the “distinction” of having the worst shooting massacre in the U. S.  A pall is settling over us, but Orlandoans and the surrounding communities are pulling together.  1500 donors lined up to donate blood, heroic actions by the Orlando PD, SWAT teams, patrons of the night club who were not injured, helping as they could:  carrying friends, supporting those who could walk.

swat

Photo courtesy of CNN

At first, it was 20 estimated dead.  The final count was devastating:  50.  And more than 50 injured; some, critically.

scene following shooting

Photo courtesy of CNN

Websites have been set up already, at 3:00 pm, to list the names of people who lost their lives, and those who are being attended at area hospitals.  Also, very soon after this tragedy, organizations and neighbors started collecting donations to help the families of those people who were shot.

Swift work by the courageous Orlando PD prevented more deaths, for sure.  The Orlando community has come together quickly and with great determination, to show our nation and the world, that life will continue as before in the face of the lone wolf’s determination to kill.  The terrorist died in a hail of bullets exchanged with the Orlando PD.

In conclusion:

This cretin was authorized and licensed to buy guns.  He worked for a security firm as a security officer for hire for 9 years!  He didn’t have to go through a full background check.  I hope we will have some scrutiny by government officials, to know why this was allowed, and to stop the exemption of security companies employees to full background checks when purchasing any type of gun.  He bought most of the guns he had on his person, within the last 2 weeks.

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Discrimination By Insurance Companies Against The Chronically Ill

 

Despite the Affordable Care Act (ACA), commonly called “Obamacare,” and its requirement that medical insurance companies accept those with pre-existing conditions, insurance companies have found ways to deny services while keeping their eyes on the bottom line at the expense of those patients who are the most vulnerable.

An article by Angela Ostrom, published in Newsweek, points to the denial of quality coverage to patients with epilepsy, cancer and a host of other chronic conditions.  New and creative ways are found in which medical insurance companies could “skirt around” the lawful charge and focus of the ACA.

“One common strategy is to design plans so that medications for conditions like epilepsy, cancer [ME, fibromyalgia, lyme disease and others] and HIV/AIDS are all but unaffordable.”

“Federal rule makers are set to change that. They’re attempting to prevent insurance companies from denying quality coverage to patients with epilepsy, cancer and a host of other chronic conditions.  If they succeed, they’ll have, at long last, achieved one of the ACA’s most important goals:  ending discrimination against sicker patients.”

It is widely known that Big Pharma is getting rich upon the backs of unfortunate sufferers of chronic and/or serious and life-threatening illnesses.  These patients have huge medical and prescription costs – a greater percentage than those of us who are blessed with good health.  The more ill the patient is, the higher their cost of medical care, of course; however, the more ill the patient, the less income.  A paradoxical situation, but that’s the truth of it.

“The ACA bans insurers from outright refusing to cover people with pre-existing conditions. Unfortunately, that provision didn’t actually stop insurance companies from turning away chronically ill patients—it just forced them to find new and creative ways to do so.

Cutting back on prescription medication.  It's too expensive.

Cutting back on prescription medication. It’s too expensive.

“Insurers place many or all medications for a particular condition on the highest “tier” of their drug formularies—the lists of medicines patients are allowed to take, or off the formulary altogether. For medications in the highest tier, individuals are often required to cover 40 percent—or more—of the total cost.”

“Sadly, this technique for raising the cost of essential and often lifesaving therapies is now standard.”

There are other tactics that medical insurance companies use in order to make it more difficult for very ill patients to get the medication and care they need.  Too many patients don’t buy the medication they need.  It’s too costly.  Many patients cut back on their dosage of medication, trying to make it last longer, but while doing this, they render the medication useless as it then has no beneficial effect.

On another note:

Assistance from governments – state and/or federal – is like trying to trudge through a mud slide several feet deep, while going against the slide’s direction of movement.  Not a good picture.

Social Security Disability applications go through an automatic first denial.  One applicant’s application was denied along with the explanation for denial that had totally nothing to do with the applicant’s reason for applying for financial relief.  It was evident that the federal employee didn’t take the time to actually read the application and accompanying documentation.  Or, he/she was under orders to automatically deny.  This tactic sounds more reasonable, since Social Security Administration keeps complaining about its bottom line.

As with too many federal agencies, the weakest keep getting pushed “under the rug.”

[Pill box image from bingdotcom]

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New Jersey Federal Judge Paves the Way for Discrimination of Disabled Students By Religious Schools

Noticed on DisabiltyScoop:

A law suit was brought to the Haddonfield Friends School in Haddonfield, N.J. by Angela Rota, of Cherry Hill, N.J. in 2014, on behalf of her son Sky, who is now 12.

“As a private school with religious affiliation with the Religious Society of Friends (Quakers) and under the control of the Haddonfield Monthly Meeting,” [Judge Joseph] Rodriguez said, “the school was exempt from the Americans with Disabilities Act.”

The judge ruled that “Quaker schools are not required to provide services to students with learning disabilities, and that the small Quaker school had not discriminated against a 10-year-old fourth grader with attention dysfunction and dyslexia who was expelled in January 2014.”

“[Rota] said Haddonfield Friends should not be able to claim a “blanket exemption” on religious grounds because the school was not overtly religious, welcomed students from multiple faiths, and made no attempt to convert them.”

Sky was evaluated by a professional and found that, although he was a bright child, he suffered from learning issues, including attention deficit hyperactivity disorder, difficulties with listening and writing skills and dyslexia.

Sky’s parents’ concerns and professionally recommended assistance were ignored by the school, including the requested extra time for tests and providing individual and small-group instruction when there were writing exercises.  Also included in the suit were charges that his teachers belittled him in class.

SOAP BOX:

I believe we should be on alert.  Our hard-won rights are being washed away like the ocean’s water takes the sand as the tide recedes.  The Scales of Justice are weighted against those who are not in strong positions.  The weak are being pushed down and aside, as ultra conservatives are gaining (and have gained) stronger positions.

Disabled and minority citizens are finding their rights are being ignored in favor of those officials’ views who have louder voices and more power.  The “powers that be” are feeling their power, and they are puffing out their chests.  There is more than one way to interpret our laws and our Constitution, and those people are going for the strictest interpretation in order to keep the masses “in their place.”

People PLEASE VOTE.  Voting is the only way to make sure our “representatives” listen to our voices.   If they don’t, then they will have a very short time in office indeed.  The ultra-conservatives want it their way.  Our lawful rights are being stripped.

Religious freedom DOES NOT MEAN only for the few.  We don’t need to have the religious beliefs of some citizens rammed down our throats if we are not of that persuasion.

Freedom from discrimination of our beliefs is one of the most basic ideals.  It is the reason the original colonists came to these shores.  They wanted to practice their religion without discrimination.  Unfortunately, religious discrimination has reared its ugly head here, now.

Other forms of discrimination are appearing in stronger voices.  Religion and disability are not the only victims.  Sexual orientation is another.  I say, let live.  People of different sexual persuasion have a right to live the way they desire.  Are they hurting you, conservatives?  They want to live in peace like everyone else.

Recently, some discriminatory state laws have been signed into law, and some are in the state legislatures and will most likely be signed into law by governors.

Don’t let this continue.  Wake up!  The foundation of our country is in peril – literally and figuratively.

 

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