Voting for Hillary

Democratic presidential candidate, Sen. Bernie Sanders, I-Vt., speaks during the Des Moines Youth Summit, Sunday, Sept. 27, 2015, at Creative Visions in Des Moines, Iowa. (AP Photo/Charlie Neibergall)
Sen. Bernie Sanders, I-Vt., speaks during the Des Moines Youth Summit, Sunday, Sept. 27, 2015, at Creative Visions in Des Moines, Iowa. (AP Photo/Charlie Neibergall)

After nearly 29 million Americans voted in the Democratic primaries and the 13 million who voted for Senator Bernie Sanders we have a presumptive nominee for President, Hillary Clinton.

Senator Sanders won primaries and caucuses in 22 states with almost 1,900 delegates. Hillary Clinton will go into the convention with 389 more pledged delegates and many more superdelegates.

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As a Bernie Sanders volunteer and former staffer it was an honor to work for the Senator, and the political revolution. Together, we began a revolution to transform American politics and that revolution continues into the Democratic National Convention and beyond.

Untitl36edWe fought and continue to fight for a government that works and represents us all, not just the one percent. We fought and are fighting to change our Party to make it more progressive, inclusive, and welcoming.

Yes, Bernie Sanders did not win the Democratic Party’s nomination for President, nonetheless, we made progress in working with Hillary Clinton’s campaign to produce the most progressive platform in the history of the Party.

hillary-clinton-01-800Now, our job is to ensure the platform is implemented by a Democratic Senate, a Democratic House, and a Hillary Clinton president.

We have an opportunity to come together as a Party and work toward victory over hate and divisiveness. I cannot stress enough that this election is one of the most important elections of our and perhaps my lifetime. There is so much at stake with a Donald Trump president.

The time to come together is now.

As Democrats, we believe that we are stronger together, when we work together to get things done, and fight together to win elections.

As Bernie Sanders said during his endorsement of Hillary Clinton,

This election must be about bringing our people together, not dividing us up. While Donald Trump is busy insulting Mexicans, Muslims, woman, African Americans, and veterans, Hillary Clinton understands that our diversity is one of our greatest strengths.

If you think that this election is not important just take a moment to think about the Supreme Court justices that Donald Trump will nominate, what that will mean to our civil liberties, equal rights, and health care access.

This election has been about the issues and it continues to be about them. Bernie campaigned for universal health care. Now, as Bernie said,

Hillary Clinton wants to see that all Americans have the right to choose a public option in their health care exchange, which will lower the cost of health care.

But what is Donald Trump’s position? Well, he wants to do the same thing that every other Republican in Congress wants, to repeal the Affordable Care Act, and throw 20 million people off their health insurance. He also wants to cut Medicaid.

The last thing we need today in America is a president who doesn’t care about whether millions will lose access to the health care coverage that they desperately need. We need more people with access to quality health care, not fewer – Bernie Sanders

I have many disagreements with Hillary Clinton and now I disagree with her choice for Vice-President. Nevertheless, I am supporting Hillary Clinton for president. I hope that you will too because we cannot let there be a chance of a Donald Trump president.

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Source: The Hill

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July 3 & Bernie Sanders in Council Bluffs, Iowa

11695825_10204817824588262_1182260142788144659_nOn July 3rd, I had the awesome opportunity to meet and introduce Senator Bernie Sanders at his campaign event in Council Bluffs, Iowa.

I had a blast, it was amazing. This also just happened to have been my official coming out in support of Senator Bernie Sanders for President.

Bernie Sanders is serving his 2nd term in the U.S. Senate and he won his last election with 71%. Bernie has served 16 years in the U.S. House, and he is longest serving independent in our nation’s history.

Bernie Sanders served 4 terms as Mayor of Burlington, Vermont and he was first elected in 1981.

In the 60s, as a student and activist, Bernie was a frontline champion for equality. He was even arrested while protesting the segregation of schools, he organized against segregated housing in Chicago, and he marched on Washington, D.C. with Dr. Martin Luther King, Jr.

Bernie Sanders is one of our nation’s most persistent voices defending the interests of the working class and standing up to the excesses of corporate America. He is also widely considered the most progressive member of the U.S. Senate.

I first became involved in politics in 2012, when I volunteered with the Iowa Democratic Party. Last year, I was elected Affirmative Action Chair for the Pottawattamie County Democrats.

As you all may be aware, I live with a very rare genetic disease called cystinosis. The disease causes the continuous cellular accumulation of the amino acid cystine to rise to toxic levels, resulting in irreversible tissue and organ damage if left untreated even for a short time. The disease damages all of my organs, especially my kidneys, eyes, muscles, thyroid, and brain.

Health insurance in the U.S. is confusing for most people, however it is especially difficult (even with the ACA) for people living with cystinosis, or any serious illness. Individuals like myself must be sure that our health insurance will answer all of these questions:

  • Does the plan cover ALL your prescriptions (anti-rejection, Cystagon, Procysbi, Cystaran)?
  • Are your medications (anti-rejection, Cystagon, Procysbi, Cystaran) on the “formulary” or must they be ordered through as specialty pharmacy? Will you have to pay out-of-pocket for specialty pharmacy orders?
  • Is there a mail-order option?
  • Does the plan permit you to see the providers you already have established relationships with and allow you to be hospitalized at the medical center of your choice?11695876_863892750332397_2033260714184318579_n
  • What does it cost to go “out-of-network”?
  • For medications that may not be FDA approved, what will be the cost to you?

Living with cystinosis and dealing with doctors, hospitals, pharmacies, and insurance has led me to be a supporter of the single-payer healthcare system, which Bernie stands for.

As you may be aware, I am a student at Iowa Western Community College, studying Psychology.

11059383_860752873979718_241580374969825418_nNavigating how to pay for my education, while dealing with cystinosis can be daunting. I already have over $8,000 in student loan debt.

However, I have hope because Bernie will work towards college affordability. He believes that everyone regardless of their family’s income should be able to get a high quality education.

As a transgender woman, I know Bernie has my back because he has been out there fighting for LGBTQIA+ equality since the 70s. As U.S. Representative in 1996, he voted against the Defense of Marriage Act, which banned all federal recognition of same-sex marriages, and Bernie has always voted for non-discrimination bills that include “sexual orientation” and “gender identity” protections.

*My support for Senator Bernie Sanders will not interfere with my position as Affirmative Action Chair for the Pottawattamie County Democrats.*

Trans-Pacific Partnership (TPP) = Race to the Bottom

DSC_7198I am opposed to the President’s trade deal, the Trans-Pacific Partnership (TPP), and I urge you all to oppose it too. 

Join me in speaking out and let’s STOP FAST TRACK! Visit this website to learn how to best use your voice: stopfasttrack.com

The Trans-Pacific Partnership (TPP) would grant broad powers to multinational companies operating in North America, South America, and Asia. A total of 12 nations. TPP would allow companies and investors to challenge regulations, rules, government actions and court rulings – federal, state, or local – before tribunals organized under the World Bank or the United Nations. Thus far, TPP is supported by corporate Democrats, Republicans and various businesses. The trade deal would even allow multinational companies to sue in the United States and elsewhere. Therefore, the overall priority of TPP is to protect corporate interest at the cost of the consumers.

 

“Multinational corporations are increasingly realizing this is an opportunity to gut U.S. regulations they don’t like,” said Senator Elizabeth Warren (D-MA) in an interview with POLITICO.

These corporations will be able to do this because of the Investor-State Dispute Settlement (ISDS) within the TPP. ISDS would allow foreign companies to challenge U.S. laws – potentially to pick up huge payout from the taxpayers – without ever stepping into a U.S. court. Moreover, from 1959 to 2002, there were about 100 ISDS claims worldwide. However, in 2012, there were 58 cases. Two recent cases include a Swedish company that sued Germany because Germany decided to phase out nuclear power after Japan’s Fukushima disaster, and a Dutch company that sued the Czech Republic because the Czechs didn’t bailout a bank that the company partially owned.

“Conservatives who believe in U.S. sovereignty should be outraged that ISDS would shift power from American courts, whose authority is derived from our Constitution, to unaccountable international tribunals,” said Sen. Warren (D-MA) in the Washington Post.

With more and more progressives coming out against the TPP, pro-TPP Democrats are combating our arguments by being dismissive of them, and especially of Senator Warren by saying that she has been stoking unrealistic fears. One of these pro-TPP Democrats said, “Throwing out ISDS based on trade opponents’ nightmare scenarios would be like tearing down the entire U.S. judicial system because someone sued Starbucks over spilling hot coffee.”

Another Democrat opposed to the TPP Senator Charles Schumer (D-NY) had this to say, “It seems to indicate that savvy, deep-pocketed foreign conglomerates could challenge a broad range of laws we pass at every level of government, such as made-in-America laws or anti-tobacco laws. I think people on both sides of the aisle will have trouble with this.”

The TPP gets even better, under it, a member nation could be forbidden from favoring “goods produced in its territory.” Meaning that “every asset that an investor owns or controls, directly or indirectly, that has characteristic of an investment,” including, “regulator permits; intellectual property rights; financial instruments such as stocks and derivatives; construction management, production, concession, revenue-sharing and other similar contracts; and licenses, authorization, permits and similar rights conferred pursuant to domestic law.”

“You now have specialized law firms being set up. You go to them, tell them what country you’re in, what regulation you want to go after, and they say ‘we’ll do it on contingency,’” said Lori Wallach, director of Global Trade Watch and an opponent of the TPP.

For example, in 2013, Eli Lilly took advantage of a similar provision under NAFTA to sue Canada for $500 million, accusing Ottawa of violating its obligations to foreign investors by allowing its courts to invalidate patents for two of its drugs.

It has been reported that the Obama administration hopes the Trans-Pacific Partnership will be a centerpiece accomplishment of his second term. The officials also claim they are confident in passage of both TPA and TPP, however with largely Republican support and just some Democrats. The administration is asking Congress to “fast-track” the TPP, meaning that lawmakers wouldn’t be able to amend the deal, only vote up or down on what the administration negotiates.

President Barack Obama had this to say on the TPP, “I have fought my entire political career and as president to strengthen consumer protections. I have no intention of signing legislation that would weaken those protections.”

Even so, many progressives including myself cannot stand the TPP, they make up the organized left (trade unions, environmentalists, human rights, etc.).

Conversely, a group that calls themselves “Progressive Coalition for American Jobs” claim to be progressive and supports the TPP. They say they are a group of “progressives and Democrats committed to leveling the playing field for American workers,” according to their website. It goes on to say, “It’s critical that we give the president trade promotion authority and establish the Trans-Pacific Partnership.”

Excuse me? Progressive?

“Who are they? Are they getting paid? And this group will convince anybody of what?” asks Senator Sherrod Brown (D-OH). “There is zero progressive interest in this [TPP].”

24Progressive Coalition for American Jobs (PCAJ) includes some of the most senior members of President Obama’s former campaign team. Daily Kos reported Mitch Stewart, former aide the president asked to run Organizing for America (OFA), and Lynda Tran, the former OFA press secretary. Earlier this month, a press release from 270 Strategies announced the campaign firm started by Stewart and President Obama’s former field director, Jeremy Bird.

This is very upsetting for me personally as a former OFA member and as a supporter of President Obama.

“If you look at the progressives – labor unions, activists, online organizations – who are lined up against the TPP, there are no credible groups left to build a ‘coalition,’” said an aide to a progressive House member. Even House Minority Leader Nancy Pelosi doesn’t seem to support the TPP, as she privately cautioned her members to keep their powder dry in order to negotiate the most liberal deal possible.

Candice Johnson, spokesperson for the Communications Workers of America said on PCAJ, “It’s insulting.” She went on to say, “You put progressive in your name and that’s going to convince people?”

“At this point, 270 Strategies is well known for its AstroTurf efforts to slap a progressive label to the endeavors of Wall Street Wing Democrats and their corporate masters, but this is an earth-shattering new low,” Neil Sroka, spokesperson for Democracy for America. “You can be a progressive committed to fighting for working families or you can be for this massive job-killing trade deal written by 500 corporate reps, but you can’t be both.”

PCAJ was asked about who funds the group and who the members are. Tran, the former Obama aide wouldn’t answer any of those questions. She did say, “We won’t be hosting rallies or organizing major field activities.” Instead she said they will focus on helping “get the word out” on President Obama’s trade deals.

“There is a progressive case to be made for this and I think the goal of this group [PCAJ] is to say, ‘There’s more than one kind of progressive out there with a message on trade’ and what hasn’t been heard,” said an aide to a member in the New Democratic coalition who has been working with the PCAJ.

The White House has been asked about the group, and a spokesperson said that the administration “welcomed” the group’s input. The spokesperson added, “It’s not surprising that groups that share this commitment have decided to add their voice to the discussion, and we welcome their input.”

Image found on google
Image found on google

A top progressive consultant in Washington, D.C., Mike Luz, wrote in an email on PCAJ and TPP, “Every progressive group and sector that works on economic issues – labor, consumer groups, enviros, the online groups, civil rights groups, human rights groups, you name it – is vehemently against TPP, so I don’t know what progressives are in this group’s coalition.”

Based on all of the above and additional resources, I believe I am better able to understand the TPP. Therefore, I stand against it, and I ask you all to join me in speaking out against this terrible “trade agreement.” I believe that President Obama does wish the best for our nation, however he is most definitely wrong when it comes to the TPP.

Join me in speaking out and let’s STOP FAST TRACK! Visit this website to learn how to best use your voice: stopfasttrack.com

 

*Sources: The New York Times, The Washington Post, POLITICO, and BuzzFeed News*

Orphan Disease

Do you fear your birthday? Do you worry about the fact that your days are numbered? Do you fear aging because you know death could be nearby?

I do, and many others like me do too. We do this because we have “orphan” diseases and know that our lives are numbered unless a miracle occurs and a cure is found.

1528646_689146354459709_255445209_nMy name is Mika J. Covington; I’m 24 years old and I have cystinosis. Cystinosis is a rare “orphan” disease that causes the amino acid cystine to accumulate in the cells. As the cystine accumulates in the cells, it slowly damages organs including the kidneys, liver, thyroid, eyes, muscles, and brain. Pharmaceutical companies’ control which diseases are to receive attention and funding from the medical and research communities by determining how much financial gain they will make from the disease. Pharmaceuticals created the term “orphan” disease.

An “orphan” disease is a disease that has not been “adopted” by the pharmaceutical industry. Critics maintain this because there is little financial incentive for the private sector to make and market new medications to treat or prevent them. There are almost 7,000 “orphan” diseases in the United States that collectively affect nearly 30 million people. An average of about 4,288 people for each disease. Specifically, in the case of cystinosis, only 2,000 people in the world are affected and in the United States there are only 500.

ki2011301f1Cystinosis has three forms, nephropathic (infantile), late-onset (intermediate), and ocular (adult). I have nephropathic (infantile) cystinosis, which is the most common and severe form of the disease. Patients with nephropathic cystinosis appears normal at birth, however before one year of age they have excessive thirst and urination, and failure to thrive. They are smaller than others their same age and often tend to be in the lowest percentile or even off the pediatric growth chart. And they have delays with walking and bearing weight. Late-onset cystinosis, kidney symptoms typically become apparent during adolescent years. With ocular cystinosis, cystine crystals are present in the eyes but kidney function remains normal.

970200_581143018593377_1471588441_nUnfortunately, cystinosis has only one treatment, cysteamine. Cysteamine slows the progression of the disease by removing the cystine from the cells. There are only two forms of the medication, Cystagon and Procysbi. Cystagon was approved by the Food and Drug Administration (FDA) in 1994, and must be taken every six hours every day and has many side effects. Procysbi was approved by the FDA in 2013 for the treatment of only nephropathic cystinosis in adults and children six years and older. Procysbi is a delayed-release form of cysteamine that must be taken every 12 hours every day with many of the similar side effects as Cystagon. However, there is only one treatment for the corneal cystine crystal accumulation, Cystaran. Cystaran was approved by the FDA in 2012. The medication must be put in the eyes, one drop in each eye every hour while awake.

I have been on Cystagon for nearly 22 years of my life. I was on the drug for a part of the clinical research trial before it was approved by the FDA. Cystagon kept me alive, however it made me sick. It caused me to have nausea, vomiting, gastrointestinal issues, headaches, bad breath and body odor. The medication did this because Cystagon dissolves quickly in the stomach causing the harsh chemical make-up to affect the stomach, which has been commonly known to cause stomach ulcers. Taking Cystagon, we don’t get a break because it must be taken every six hours every day. Now, I am on Procysbi.

Jon and me after our surgeries!
Jon and me after our surgeries!

Another major treatment for cystinosis is a kidney transplant, which has become a standard in the treatment of cystinosis because cysteamine only slows the progression of the disease. If not treated by cysteamine, kidney failure occurs at about 12 years old or younger. With cysteamine treatment, the damage of the disease commonly leads to kidney failure by the late teens. Most of the patients must be placed on dialysis to keep them alive before they receive their kidney, which causes more pain, and suffering; sometimes death occurs while waiting for the kidney.

1_HIV-AIDS-StatisticsNevertheless, being an “orphan” disease, cystinosis does not get the attention or research funding it need to help find better treatments or a cure. All the while, children and young adults are dying from this disease. Compare cystinosis to the Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome (HIV/AIDS), which affects 1.1 million people in the United States. Persons with HIV/AIDS tend to have a longer life-span than cystinosis patients. HIV/AIDS has more attention and gets more research funding for two reasons. First, it affects more people and thus is more profitable for pharmaceuticals to do so. (I fully recognize that this use to not be true and many people with HIV/AIDS face stigma.) Second, because of the larger number of people with HIV/AIDS, the more people are buying their products. (This is not a good thing; I believe that we should rid the world of HIV/AIDS too.) This is unlike many “orphan” disease, and especially unlike cystinosis.

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National Institutes of Health (NIH)
National Institutes of Health (NIH)

We must find a cure for all of these “orphan” diseases and certainly for cystinosis. Thus, I have been participating in a long-term clinical research study at the National  Institutes of Health (NIH) in Bethesda, Maryland. In the study, I see Dr. William Gahl, one of the leading researchers in the world on cystinosis. Dr. Gahl’s study was one of the first studies of its kind on cystinosis. I currently see Dr. Gahl for the specialized study of the progression of the disease, which I hope will assist in finding a cure. I began seeing Dr. Gahl when I was a baby, shortly after I was diagnosed with cystinosis. I would spend a couple of weeks at a time there. Basically, I grew up there from 1992-1996. In addition, I have participated in several other studies, including at the University of California at San Diego Medical Center, where they studied the neurological and psychological effects of cystinosis.

Today, I am raising funds to help find that cure for my terrible disease. The money raised will go directly to the Cystinosis Research Foundation (CRF). CRF is a non-profit 501c3 organization that was started by the amazing Stack family in 2003. this was after their daughter Natalie Stack made a wish on the eve of her twelfth birthday,

“to have my disease go away forever.”

cystinosis_research_foundation_partnerCRF today supports bench and clinical research that is focused on developing improved treatments and a cure for cystinosis. CRF has funded every bench and clinical research study that led to Procysbi, allowing cystinosis patients like me to take the drug every 12 hours instead of every 6 hours, which has improved our quality of life. They established the CRF Cystinosis Gene Therapy Consortium, whose mission is to bring stem cell and gene therapy to clinical trial. They also work on effects of cystinosis on neurological function and cognitive development, causes of muscle-wasting and potential therapies.

Finding a cure may save my life, as well as others with cystinosis including my sister Mary, or even persons with other diseases. Pharmaceutical companies may not make a profit off the knowledge discovered by studying one “orphan” disease, however often those discoveries leads to advancements in other diseases.

To help find that cure, please make any kind of donation you are able to the Cystinosis Research Foundation (CRF) on my behalf here: Hope Through Research

*All funds donated going directly to research.*

Leaving Nebraska and Forward Equality

That Rally that started a lot of internal drama within the Omaha LGBT Community over my grassroots organizing.
That Rally that started a lot of internal drama within the Omaha LGBT Community over my grassroots organizing.

I decided to leave Forward Equality and most progressive grassroots organizing in Nebraska because I need to focus on my own well-being. Forward Equality has been a project of mine for about four years. Several friends and I formed Forward Equality in 2010 to work on progressive issues, at the time mostly queer issues. However, in the past couple of years moved to be focused on a variety of progressive issues.

Making the decision to leave Forward Equality and conclude all Forward Equality operations was very difficult for me. I personally invested a lot of my time and energy into Forward Equality and the progressive issues. Many of the issues were very personal for me.

tumblr_m6cqwlbVTa1qzhkvho1_500For instance, I am very passionate about healthcare being a universal human right because I personally know that continuous treatment for chronic medical conditions saves lives and so does preventive healthcare services. I am also very passionate about workers’ rights and a living wage because I have seen firsthand how poverty hurts children and families. Not to forget how discrimination, harassment, and bullying affects all humans especially youth and how it is literally killing our youth. 

 

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Having an awesome time rallying against HATE

In addition, it is difficult for me to leave Forward Equality and the progressive community in Nebraska because Nebraska is my birthplace. I grew up there. I don’t want to give up on making Nebraska a safe and welcoming place. I don’t want to let Nebraska continue to be a place that I feel shameful to be from. I want to someday be proud of coming from Nebraska. 

Me in Pre-op with Diane and family
Me in Pre-op with Diane and family

All of these progressive issues are so important to me, I cannot even use words to express how it feels to have worked on them for so long and then need to move on. However, after some discussions with my support network and healthcare team, I decided to conclude all of my progressive grassroots organizing in Nebraska. 

In these discussions, I also had to decide if I wanted to disclose why this is needed. I am still not sure the answer to that or if there is a right or wrong answer. Therefore, I will say this; Nebraska in general contains a lot of painful and hurtful events and statements. This includes many of the attitudes and lack of inclusion I faced there while organizing around many of the progressive issues I cared greatly about. Overall, some of what happened there and what was said was harmful to my health. Nevertheless, there was still a lot of empowering and awesome events and statements that helped me learn and grow. 

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Having an awesome time with Forward Equality volunteers rallying for equal marriage rights and the defeat of Nebraska’s superhate marriage amendment (416).

 

From April of this year on, I will be moving forward and working on those progressive issues that do not hurt my well-being. Thus, I will focus my progressive grassroots organizing in Iowa and I will only exert the physical and emotional energy that is within my ability.