Helping Anyone Who Needs It

I have a childhood friend, a life-long friend.  She has a husband and three young sons.  Her youngest son, age five, was recently diagnosed with Acute Myeloid Leukemia.  AML is very aggressive cancer.  Today this five year old boy is battling for his young life at Cooks Children’s Medical Center in Fort Worth, and his parents are at battle alongside him.  Over ten-thousand people have visited his Caring Bridge web page since it began a little over a month ago.

Just one month ago, this boy and this family of five were carrying out their daily routine of life as we all do.  They were hurrying to school and attending church.  They were preparing for little league baseball games and attending birthday parties.  They were completely unaware of what would be in store for them the rest of this year and most likely the following year.  And now their life looks radically different.  Mom and Dad are taking turns staying in the hospital with their sick child.  They are seeking the balance of being present for their sick child and being at home with their two healthy children.  And they are dealing with decisions regarding their son’s treatment, most of which include determining which medicines are best for their son’s diagnosis.  All of this is sudden.

According to an article by Elizabeth Cohen, Senior Medical Correspondent at CNN, families seeking alternative medications for severely ill children are sometimes interested in what has become known as “compassionate use” drugs.  These drugs must be approved for use by the Food and Drug Administration before administered, and are often administered when traditional treatments are exhausted or unresponsive.  The process of obtaining approval from the FDA for these drugs can often take several weeks.  Sometimes, experimental compassionate use drugs that might curb side effects or aide in a patient’s recovery process are not approved for use in time to benefit patients.

The Cohen article references a child diagnosed with leukemia at age 13.  Before the family could receive permission from the FDA to receive and use the desired drug, the child’s cancer moved to stage four and soon after he died.  This process with the FDA to obtain these experimental drugs had only been in progress for three weeks.  Three weeks.  Had these drugs been available earlier, could they have saved him?  The family now has no way of knowing the answer to this question, but I am confident as a mother that it is too painful for them to even consider the possibility.

My empathy to this family is indescribable.  I cannot imagine the lengths to which I would go to exhaust every possible option of treatment for my two daughters were they facing a life-threatening disease.  I cannot tolerate for a moment, or begin to conceptualize, the level of pain families who have been denied available treatment options for their children, for whatever the reason.  No reason is good enough in my book.  It seems in this instance with the thirteen year old, that funding or insurance was not the roadblock, and only bureaucratic federal procedures in place prevented this compassionate use drug from being available.

The point I’m making here is too obvious to spell out.  It’s imperative that we ask the FDA why we can’t speed up these procedures.  And the article points out that the FDA is not the only organization to blame.  Often, the drug manufacturers themselves deny more production of a certain drug or the availability of that drug to a supplier.  

The article states, “Companies fear that a death — especially if it’s a child — could turn the public and the FDA against them.”  However, drug industry executives argue this point. They say they often approve requests for compassionate use drugs to extremely sick patients.  And then Cohen says, “But they do agree that servicing compassionate use requests in general can divert them from their goal, which is to get the drug on the market where it can help anyone who needs it.”

Ironic, isn’t it that somehow “compassionate use” requests are not in the same category as “anyone who needs it.”  I tend to think that dying would qualify as a need.  How about you?

 

Cohen, E. (2014).  Dying Patients Denied Drugs. Retrieved from http://www. cnn.com /2014/04  /05/health/Cohen-compassionate-use/index.html?hpt=hp_c2

Advertisements

Are you entertained?

I love entertainment.  Right or wrong, it’s been a big part of my life.  I watch movies.  I watch television series.  And now with streaming Netflix and a lovely little device known as appleTV, I can watch OLD movies and OLD television series whenever I like.  Often when things seem out of control or simply the boredom of “normal” catches up with me, I head to the movies.  Even in solidarity, I enjoy myself; escaping the thoughts of the day for at least ninety minutes, accompanied only by my $4.00 fountain diet coke and yellow box of Raisinettes.

This beloved and faithful outlet for me is being threatened by my own social consciousness.  And, I’m a little disappointed with my conscientiousness.  It’s like the betrayal of a faithful friend.  Kind of like, we used to be in love but now I don’t like you that much anymore.  Part of my bad taste in my mouth came about recently.  The Huffington Post reported on February 26, 2014 that Sandra Bullock is expected to receive somewhere in the neighborhood of $70 million for acting in the 2013 space movie, Gravity.  And while I think acting is a talent deserving of respectable and fair compensation, banking $70 million for one movie is hard to fathom.  And I even like Sandra Bullock.  For Hollywood, she’s alright.

What is hard about this for me is that you could buy a lot of stuff with 70 million dollars.  You could buy a 200 foot-long super yacht.  You could employ the services of an NFL linebacker for approximately two years.  And for the techies out there, $70 million is roughly 113,000 iPads in your possession.  And if you’d rather travel the world on $100 a day, it’d take you approximately 1,950 years to come to the end of your journey.  Coincidentally, in 2010, the island country of Tuvalu reported a gross domestic product of $36 million, roughly half of 70 million dollars. And finally, you could buy 140,000 cows from Heifer International and have them sent to countries around the world, possibly ending poverty for 140,000 families.

The average movie takes about 2-4 months to make.  This might mean about 100 days on set for the typical movie star.  Considering the length of Gravity itself, this equates to Bullock earning approximately $769,000 for each minute of the 91 included in the film.

While I really don’t want to consider these numbers and prefer to ignorantly placate my love affair with Hollywood, putting my head in the sand just doesn’t seem to do justice this time.  It’s hard to see the injustice in the world, the need for clean water and food everywhere and think that we’re doing this thing right over here in Hollywood.  And by Hollywood, I mean how it comes streaming through our living room and to the extent to which we go to get our fix.

Do we as American consumers, really need to be entertained this much, and to this expense?  Really.  And then my thoughts go to why these actors are paid so much.  Why don’t we just pay them less?  And then I make the connection that indeed I have to pay them less, by not buying movie tickets.  These tickets I buy from Warner Brothers, enable the studios to in turn write checks reflecting the movies’ gross returns to their beloved actors. 

I think I can live with being a little less entertained. 

 

The Huffington Post Online. (2014).  Retrieved from http://www.huffingtonpost.com /2014/02/26/sandra-bullock-gravity-70-million_n_4859978.html?utm_hp_ref=entertainment

Wood, A. (2011).  What is User Virtualization and Is It Worth $70 million?  Retrieved from http://www.virtualizationpractice.com/what-is-user-virtualization-and-is-it-worth-70-million-9626/

Kicking a Habit

 

 

In a recently released episode of the popular Netflix television drama, House of Cards, one of the main characters is the wife of the Vice President of the United States, Claire.  In one scene, Claire is shown in her home smoking an electronic cigarette.  In prior episodes, the Vice President, Francis, and his wife Claire are shown sharing a nightly cigarette together, reflecting on the day and sharing a moment of solitude contrasting the very hectic lives they lead.  In this scene featuring the electronic cigarette, she jests with Francis about how she wishes it were the real thing, and then Francis shows her the stash of real cigarettes he never threw out as intended.  They light up a conventional cigarette and puff away together.  Some habits die hard.

An e-cigarette is a nifty little gadget; especially for those that have been trying to kick a cigarette habit for years.  It is a battery powered device designed to mimic the experience of smoking an actual cigarette.  Some formulas of the e-cigarette release a nicotine formula, others do not.  And they are blue.

The American Association of Public Health Physicians (AAPHP) says that individuals unwilling to quit tobacco smoking or unable to quit with medical advice and pharmaceutical methods should consider products such as electronic cigarettes for long term use instead of smoking.

In today’s Sunday edition of The New York Times, Sabrina Tavernise writes about the public health effects of e-cigarettes.  She says that a researcher at Boston University argues that e-cigarettes could be the beginning of the end of smoking in America (Travernise, 2014).  This sounds like good news.  However, the professor of medicine and this researcher’s mentor is convinced that e-cigarettes may actually erase the hard-fought progress to reduce the number of people smoking over the last fifty years.  How could this be?

Researchers are saying that not many people who are smoking conventional cigarettes are actually switching to electronic cigarettes.  It seems that they are smoking both.  In addition, researchers are contemplating that by smoking electronic cigarettes, smokers may actually be prolonging the habit, by offering a dose of nicotine at times when getting one from a traditional cigarette is inconvenient or illegal (Travernise, 2014). 

Some researchers are saying what is even more damaging is that these clever e-cigs are making smoking look “cool” again.  Questions arise concerning the images that our youth are receiving.  Will the advertisements and images of e-cigarettes in the media attract our adolescents for the novelty of the idea and then lead them into an addiction that they otherwise might have avoided.  It seems as though e-cigarettes are not the perfect answer to a very long problem of quitting smoking, they do offer a better alternative for those that want to reduce their intake of tar, but are unable to completely kick their nicotine habit.

Travernise, S. (2014, February 23).  Hot Debate Over E-Cigarettes as Path to Tobacco, or From It. The New York Times, pp. 1A, 18A.

 

 

 

The United States: Leading the Way in Incarceration

There’s a group of people working for The Sentencing Project in Washington, D.C. A friend of mine is working with them. He’s a George Washington educated Attorney, but really he’s a social worker. Currently, he advocates for a population of Americans relegated to surely one of the lowest tiers in our society. I’m speaking of our inmates and former inmates of the U.S. Criminal Justice System.

This marginalized and often dismissed population is, upon entering the system, typically stripped of their own name to be replaced with a six digit number. The Sentencing Project is an organization that addresses, advocates and educates for justice reform in our U.S. Criminal Justice system. Few Americans are aware that America is currently the world’s leader in incarceration, retaining 2.2 million individuals; a greater population than the City of Houston, Texas. Of that 2.2 million, one in three young African-American men are mired in the criminal justice system.

Many issues surround reform in the U.S. Criminal Justice System. States have laws on the books that prohibit former felons from voting. Issues exist pertaining to smoothing the transition of inmates back into society after incarceration. These issues are referred to as felony disenfranchisement. Although some businesses support the employment of former felons, it is difficult to obtain employment with a record: felony disenfranchisement.

The “war on drugs” and sentencing policies that followed national awareness efforts resulted in growth in incarceration for drug offenses. At the Federal level, prisoners incarcerated on a drug charge comprise half of the prison population, while the number of drug offenders in state prisons has increased thirteen-fold since 1980. Most of these people are not high-level actors in the drug trade, and most have no prior criminal record for a violent offense.

Advocacy groups like The Sentencing Project work actively to reform the federal mandatory penalties for crack and powder cocaine offenses. These reforms intend to make penalties more equitable and fair to the nature of the charge.

On Tuesday, February 11, 2014, U.S. Attorney General Eric Holder, Jr. encouraged states to repeal any laws that prohibit former inmates from voting. Decisions like this would definitively restore the right to vote to millions of people. According to The Sentencing Project, African Americans make up more than one third of the estimated 5.8 million people who are currently not allowed to vote. However, this urging from General Holder is simply a cry for help. Mr. Holder really has no authority or power to create change by himself. This declaration brings attention to felony disenfranchisement from the Justice Department and, in essence, President Obama, to move forward to eliminate laws that he says disproportionately decline minorities from their polling place. Mr. Holder said “it is unwise, it is unjust, and it is not in keeping with our democratic values,” Mr. Holder said at a civil rights conference at Georgetown University. These laws deserve to be not only reconsidered, but repealed.”

There is an interesting conversation here about justice and restoration. When has justice been served? Is it when one completes their prison sentence? Do crimes exist so severe that rehabilitation is not possible and therefore one must lose all place, meaning and voice in our society? And what constitutes one to lose their place, meaning and voice in society? It seems our society has decided that a misdemeanor charge is not severe enough to cause one to lose their voice, but in some states a felony conviction is indeed.

And 77 cents for You, And a Dollar for Me…

During President Obama’s recent State of the Union message, the President discussed plans to further reduce the national deficit, create opportunities for manufacturing, close loopholes in the tax code, and further energy production. In typical State of the Union fashion, he proposed many grandiose policies with enthusiastic delivery for the kind consideration of Congress and the American populous.

Typically I am easily wooed with a broad national platform for change. This year however, I noticed an emotional response from within my spirit after hearing a small portion of the speech where the President addressed wages. One highly memorable statistic most likely reverberated throughout the female consciousness in living rooms from San Francisco to Jacksonville. I’d like to personally congratulate the government employee at the Census Bureau that was responsible for providing this factual treasure to the speechwriters of the State of the Union address. He or she is now a national treasure among American women.

It seems that most articles and headlines we see in the media these days speak to the need for an increase in our national minimum wage. Most of us can all agree that our fast food and sanitation workers are clearly overworked and underpaid and could use a boost, but we are too pacified with the status quo to justify this increase in Uncle Sam’s bottom line. It seems that we have been missing this information in our national discourse about discrimination towards women as it relates to their pay.

The moment I referred to earlier in the SOTU address that caused me to audibly say “amen”, was when the President of the United States whole hog went to bat for the working woman. He began by saying that, “you know, today, women make up about half our workforce, but they still make 77 cents for every dollar a man earns. That is wrong, and in 2014, it’s an embarrassment.” An embarrassment? Did I just hear the President say that this policy involving inequality in gender pay was an embarrassment? I think so. He then went on to say that “women deserve equal pay for equal work,” and that she “deserves to have a baby without sacrificing her job.” Was this President not of my gender and personally not able to relate to the experience of giving birth to live young going to bat for me? Could he possibly understand and empathize with me, and my beloved 50% of the American workforce?

And then to add to my joy, he referenced one of my favorite contemporary television programs, Mad Men, which boldly and dramatically depicts social oppression and discrimination in the 1950’s and 1960’s. He suggested that America might do away with policies that belong in a Mad Men episode. It was an appropriate and needed comparison.

Some have already begun to carry this torch declaring there clearly is a wage gap. They have argued that differences in things labeled “life choices” of men and women have made it challenging to make simple comparisons. An example of a “life choice” might be a woman staying home for a period of time to care for her children. And I’m guessing that “life choices” consequently are not rewarded in the pay stubs of working women.

President Obama is said to have used a figure from the Census Bureau that makes the disparity between the sexes appear the greatest, in order to make the best cause for the American woman. Another statistic from The Bureau of Labor Statistics shows that the gap is actually only 19 cents, not 23, when looking at wages earned week to week. Some say the gap is smaller, only 14 cents if you compare wages on an hourly basis (Kessler, 2014).

It is just plain disappointing to me that in 2014 there is a need for women to advocate for their own wages in the workplace. Why are we even talking about this in 2014? Doesn’t every human being have a mother? Don’t we all understand the great sacrifice, labor and effort our mothers make to bring up our children? And how are we valuing these individuals who give life to the planet? We give them a smaller paycheck for their “life choices,” fearful that if we employ them, we might not get as much out of them as we would a man. We have female leadership in the highest levels of leadership and oversight in our government, education and economic sectors. American women are powerfully serving in our executive, judicial and legislative branches.

Our U.S. government has enacted legislation to address employment discrimination. Efforts such as the Equal Pay Act of 1963, Title VII of the Civil Rights Act of 1964, and the Equal Protection Clause of the 14th Amendment protect women’s rights to equal access to education and employment opportunities. Despite these efforts, this conversation is still a part of our national discourse (Mendel, 2012).

Even very recent legislation in 2009, known as the Lilly Ledbetter Fair Pay Act, allows salary discrimination cases to be heard in courts (Mendel, 2012). Although this should make me feel relief as a woman, I don’t feel relief. I feel exhausted, thinking about how in the world a woman faced with going into litigation over her salary would ever have the fortitude to do that considering all her other obligations and responsibilities. Other protections provided by affirmative action legislation require schools and employers to encourage participation by groups that might be underrepresented. Also, a National Equal Pay Enforcement Task Force was created to bring awareness by educating the public on wage inequality and how to enforce wage inequality laws.

Despite all this, discrimination is still occurring in the workplace. Employers can definitely pay unequal wages for equal work, fill different positions with a different kind of worker, and limit availability of jobs through discriminatory practices. If government policies force firms to pay equal wages, an organization may simply choose to not hire women. Wouldn’t that be a great way to reward our female population for the great endeavor of carrying our unborn children and bringing them into life on the planet? Next time you are at the water cooler, consider whether or not your organization is advocating for equality for the working woman and if not, why?

Kessler, G. (2014). Fact Checking the 2014 State of the Union Address. Washington Post. Retrieved from http://www.washingtonpost.com/blogs/fact-checker/wp/2014/01/28/fact-checking-the-2014-state-of-the-union-address/

Mendel, L. (2012). The earnings puzzle: why do women earn less than men? Review of business research, 12(4), 107.