2 Years Ago This Week

Me in Pre-op with Diane and family

Me in Pre-op with Diane and family

I am 24 years old now, thanks to the person who had true altruism and decided to donate a kidney to me two years ago. Although I do still live with cystinosis. However, on the 30th of May will be the 2 year anniversary of the kidney transplant (or adoption of Serenity). I am doing well. I am doing so much better than I was at this moment two years ago. I hope my living donor is doing well too.

ki2011301f1Again, cystinosis is a lysosomal  storage disease that is caused by the accumulation of the amino acid cystine. The disease leads to kidney failure, blindness, weak bones, muscle weakness, pulmonary dysfunction, and eventual death. Cystinosis disproportionately affects blond, blue-eyed children of European descent who carry the autosomal recessive genetic mutation to the cystinosin, a protein encoded by the lysosomal cystine transporter gene (CTNS) on chromosome 17p13*.

This year on the anniversary of the transplant, I will be in Denver, Colorado. I am going to a Cystinosis Patient and Caregiver Town Hall. At the town Hall, I will join conversations in how to better treat and improve care for my fellow cystinosis patients. In addition, I will have the opportunity to meet with other individuals with cystinosis and some cystinosis specialists.

However, when I get back from Denver, I will be heading back to the University of Iowa Hospitals and Clinics (UIHC) for the two year post-transplant follow up. But, I will also be following up with Dr. Nisely at the UIHC LGBTQ Clinic. At the LGBTQ Clinic I will learn what we (the team) are going to do about my hormone levels and whether or not I will start taking estrogen.

The following details show how I am doing.

Labs (05/13/2015):

  • Phosphorus – 3.2
  • BUN (Blood Urea Nitrogen) – 19
  • Creatinine – 0.97
  • Potassium – 4.2
  • CO2 – 25
  • WBC – 6.4
  • Platelet Count – 219
  • Hemoglobin – 14.4

Labs (04/01/2015):

  • Phosphorus – 2.5
  • BUN (Blood Urea Nitrogen) – 14
  • Sodium – 141
  • Total Protein – 6.9
  • Potassium – 3.8
  • Glucose – 92
  • Creatinine – 1.1
  • CO2 – 25
  • Albumin – 4.6
  • WBC – 4.5
  • RBC – 4.5
  • Hemoglobin – 14.1
  • Hematocrit – 44
  • Platelet Count – 220
  • Thyroid Stimulating Hormone – 1.35

The following is a list of all the medications and supplements I take to treat the cystinosis and prevent my body from rejecting the new kidney.

  1. Albuterol 90mcg/actuation ihhaler Indication: Asthma
  2. Clindamycin 300mg capsule, 600mg 1x daily Indication: Prevent infection from dental work
  3. Vitamin B12 500mcg Indication: Cystinosis
  4. Cystaran 0.44% eye drops Indication: Cystinosis
  5. Mycophenolate 500mg tablet, 1,000mg 2x daily Indication: Prevent kidney rejection
  6. Montelukast SOD 10mg, 10mg daily Indication: Allergies
  7. Omeprazole 20mg capsule, 20mg 2x daily Indication: Acid reflux
  8. Ondansetron 4mg tablet, 4mg every 8 hours Indication: Nausea/vomiting
  9. Procysbi (cysteamine bitartrate) delayed-release 75mg capsule, 1,050mg 2x daily Indication: Cystinosis
  10. Polyethylene Glycol 17grams Indication: Constipation
  11. Prednisone 5mg tablet, 5mg daily Indication: Prevent kidney rejection
  12. Prograf 1mg capsule, 1mg 2x daily Indication: Prevent kidney rejection
  13. Phospha 250 Neutral tablet, 250mg 2x daily Indication: Cystinosis
  14. Probiotic Acidophilus (lactobacillus acidophilus) capsule, 1 capsule daily Indication: Bowels
  15. MultiVites 2 gummies
  16. Sertraline HCL 100mg tablet, 100mg 1x daily Indication: Mood issues, depression
  17. Sennosides 8.9mg tablet, 8.6mg 1x daily Indication: Constipation
  18. Topiramate 100mg tablet, 100mg 1x daily Indication: Migraine
  19. Trazodone 50mg tablet, 25-50mg 1x daily Indication: Migraine, sleep, mood
  20. Vitamin D3 2000IU, 4000IU 1x daily Indication: Cystinosis
  21. Gabapentin 600mg tablet, 600mg 3x daily Indication: Migraine
  22. Rizatriptan 10mg ODT tablet, 10mg every 24 hours as needed Indication: Migraine
  23. Docusate Sodium 100mg tablet, 100mg 2x daily as needed Indication: Constpation

The following is the schedule for all of the medication and supplements I take.

8 or 9am: Cystaran, Prograf, Prednisone, Mycophenolate, Phospha 250 Neutral, MultiVities, Omeprazole, Docusate Sodium, Gabapentin, Tizanidine, and vitamin D

10 or 11am: Procysbi (14 caps), Cystaran, sometimes Ondansetron

2:30 or 3:30pm: Acidophilus, Gabapentin, Sennosides (as needed), Cystaran, vitamin B12

8 or 9pm: Cystaran, Phospha 250 Neutral, Mycophenolate, Omeprazole, Prograf, Docusate Sodium, Tizandine (as needed)

10 or 11pm: Procysbi (14 caps), sometimes Ondansetron, Cystaran

11pm: Sertraline, Topiramate, Trazodone, Montelukast, Gabapentin, Tizanidine, Cystaran

Education Update:

I have completed another semester at Iowa Western Community College (IWCC) for my associate’s degree in psychology. I completed Intro. Biology with a C, Composition II with an A, Social Psychology with a B, and Intro Sociology with an A. Currently, I have a cumulative GPA of 3.286.

Next semester, I will only have one more left at IWCC. Once, I finish at IWCC I will transfer to the University of Iowa to work on a bachelor’s of science in psychology and perhaps a master’s in public health.

This fall, I will be taking Human Biology; Abnormal Psychology; Gender Ideas, Interactions, Institutions; and Public Speaking.

I am going down this path because I would like to use my education to work within the cystinosis, LGBTQIA+, and transplant communities. I plan to work in research and clinic in those fields.

*Morrow, Thomas. “Do comparable Efficacy & Convenient Dosing Justify Procysbi’s Extremely High Price?” http://www.managedcaremag.com. Managed Care, July. 2013. Web. 27 April. 2015.*

Trans-Pacific Partnership Must Be Stopped


“Savvy, deep-pocketed foreign conglomerates could challenge a broad range of laws we pass at every level of government,” said United States Senator Charles “Chuck” Schumer (D-NY) on the Trans-Pacific Partnership (TPP) (Weisma).

The TPP is a cornerstone of President Barack Obama’s economic agenda for his second term in office. However, the trade agreement faces tremendous criticism from many Democrats and progressive organizations. Collectively, these Democrats and progressives claim that this trade deal would be damaging to U.S. sovereignty, that it expands the ISDS (investor-state dispute settlement), and it adds new substantive rights to foreign companies and investors. All of which would hurt the U.S. economy, damage the environment, roll-back human rights, and destroy privacy.

The Trans-Pacific Partnership (TPP) would grant broad powers to multinational companies and investors operating in North America, South America, and Asia. Under the TPP, companies and investors would be able to challenge any regulations, rules, government actions and court rulings – federal, state or local – that they do not agree with before tribunals organized under the World Bank or the United Nations. The trade agreement would also expand that authority to companies and investors in countries as wealthy as Japan and Australia (Weisma).

Importantly, the Trans-Pacific Partnership (TPP) is moving through Congress by obtaining fast-track authority, which means that when the TPP bill lands on the floor of both houses of Congress, it will only get a yes or no vote. No debate and no amendments. Recently, on the 23 of April, the House Ways and Means Committee passed the trade promotion authority (TPA) for the TPP on a vote of 25 – 13 sending the TPA to the full House (Needham).

Additionally, the negotiations of the trade agreement have all been in secret. The only information that the public has on the agreement has come from leaked documents and from what Senators and Representatives have told the public. These Senators and Representatives can only view the official document in a secure room and they are prohibited from taking any notes.

Furthermore, the trade agreement (TPP) would grant foreign companies and investors rights that are not applicable to U.S. companies and investors. It would grant access to extrajudicial tribunals. These tribunals would be staffed by private sector lawyers. these lawyers can rotate between acting as “judges” and representing the company or investor in cases against governments who have conflict of interest (Wallach and Beachy, pgs. 3-4).

Conveniently, the company or investor initiating a case can choose the venue and select one of the “judges” from a roster. The defense (usually a national government) choose another judge. Jointly, the two Parties select the third judge (Wallach and Beachy, pgs. 3-4). Thus, these tribunals lack judicial ethics. They have no public accountability and there is no requirement for tribunalists to be impartial, also they have no right to appeal. In addition, these tribunals can order governments to pay unlimited monetary compensation.

Specifically, the TPP has a massive overreaching definition of “investment” for all companies and investors involved. The following is the definition of “investment” from the leaked TPP documents:

“Every asset that an investor owns or controls, directly or indirectly, that has the characteristics of an investment, including such characteristics as the commitment of capital or other resources, the expectation of gain or profit, or the assumption of risk” (Wallach and Beachy, pg. 4).

The text continues to enumerate as example:

Regulatory permits; instruments such as stocks and derivatives; “construction, management, production, concession, revenue-sharing, and other similar contracts;” and “licenses, authorizations, permits, and similar rights conferred pursuant to domestic law” (Wallach and Beachy, pg. 4).

Under these terms of the TPP, the investors could demand monetary compensation if nations “expropriate or nationalize a covered investment either directly or indirectly.” In addition, “indirect expropriation” could be interpreted broadly to include multinational companies opposing regulatory or legal changes that diminish the value of their ‘investments.’

Thus, under the trade agreement, a member nation could be forbidden from favoring “good produced in its territory.” For example, Iowa soybean farmer cannot favor their product without facing financial punishment.

“This is not about expropriation; it’s about regulatory changes.” said Lori Wallach, director of Global Trade Watch. “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'” (Weisma).

“This deal [TPP] would give protections to international corporations that are not available to United States environmental and labor groups,” U.S. Senator Elizabeth Warren (D-MA) said in an interview. “Multinational corporations to sue national governments in international forums and win cash judgement that cannot be appealed” (White).

Meaning, that TransCanada could use the TPP to sue the U.S. for not building the Keystone XL pipeline.

Moreover, a specific part of the leaked TPP text, the investor-state dispute settlement (ISDS), would be expanded to include,

“written agreements” . . . “between a national authority of a Party and covered investment or an investor of another Party . . . that grants rights to the covered investment or investor: a) with respect to natural resources that a national authority controls, such as for their exploration, extraction, refining, transportation, distribution, or sale; b) to supply services to the public on behalf of the Party, such as power generation or distribution, water treatment or distribution, or telecommunications, or; c)to undertake infrastructure projects, such as the construction of roads, bridges, canals, dams, or pipelines, that are not for the exclusive or predominate use and benefit of the government” (Wallach and Beachy, pg. 5).

Under this expansion, TransCanada could force the U.S. government to build the Keystone XL pipeline or incur a large monetary payout for damages to TransCanda by not building the pipeline. The expansion is troubling, especially to U.S. Senator Sherrod Brown (D-OH),

“This continues the great American tradition of corporations writing trade agreements, sharing them with almost nobody, so often at the expense of consumer, public health, and workers” (Weisma).

According to U.S. Senator Warren (D-MA,

“Agreeing to ISDS in this enormous new treaty would tilt the playing field in the United States further in favor of big multinational corporations. Worse, it would undermine U.S. sovereignty.”

An example she gave to describe the new powers of ISDS would give to these companies and investors included imaging that the U.S. bans a toxic chemical that is added to gasoline because it is harmful. However, if one of these companies or investors make the toxic chemical and oppose the law, it would normally challenge that law in a U.S. court. However, with ISDS, that company or investor could then skip the U.S. court and go before one of these tribunals. If the company or investor wins, the ruling could not be challenged in U.S. court, and the tribunal could then require U.S. taxpayers to pay millions of dollars in damages (Warren).

Unfortunately, there is a growing number of ISDS cases. From 1959 to 2002, there were fewer than 100 ISDS claims in the world. But in 2012, that went up to 58 cases. Some recent cases include a French company that sued Egypt because Egypt raised its minimum wage. A Swedish company 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 they did not bail out a bank that the company partially owned. Even, Philip Morris has attempted to use ISDS to stop Uruguay from implementing their new tobacco regulations (Warren).

“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. And progressives should oppose ISDS because it would allow big multinationals to weaken labor and environmental rules,” added Senator Warren (D-MA) (Warren).

President Obama’s Trans-Pacific Partnership trade agreement goes further, it would provide substantive rights that would only be available to foreign companies and investors. For instance, the right to claim damages for government actions (such as new environmental, health or financial policies) that reduce the value of a foreign investor’s investment or that go against the level of regulatory scrutiny that an investor might have had when dealing with a previous government (Wallach and Beachy, pgs. 8-9). These new rights could mean more cases like the one in 2013, where Eli Lilly, a pharmaceutical company used a similar provision under NAFTA (North American Free Trade Agreement) to sue Canada for $500 million. Eli Lilly accused Ottawa, Canada of violating its obligations to foreign investors by allowing Canada’s courts to invalidate patents for two of its drugs (Weisma).

24Yes, there are some Democrats who support President Obama’s trade deal, and they formed a group called the “Progressive Coalition for American Jobs (PCAJ).” This group claims to be a group of, “progressives and Democrats committed to leveling the playing field for American workers.” The team who formed the PCAJ includes many senior members of President Obama’s former campaign team. Including Mitch Stewart, the former aid that ran Organizing for America (OFA) and Lynda Tran, the former OFA press secretary.

“When we looked around for other progressive voices making the case for free and fair trade, we found that there wasn’t really a vehicle for engaging the public around the benefits of this deal,” Tran wrote in an email. “So we decided to get involved and help launch the Progressive Coalition for American Jobs to bring together progressives across the activist, advocacy, and business communities” (McMorris-Santoro and Nocera).

A spokesperson from the White House said this when asked about the PCAJ,

“The president has made it clear that expanding jobs and opportunities through progressive trade deals is a priority. It’s not surprising that groups that share this commitment have decided to add their voice to the discussion, and we welcome their input” (McMorris-Santoro and Nocera).

The National Economic Council Director, Jeffrey Zients had this to add in support of the Trans-Pacific Partnership,

“The purpose of investment provisions in our trade agreements is to provide American individuals and businesses who do business abroad with the same protections we provide to domestic and foreign investors alike in the United States.”

Signaling his support for the trade agreement and specifically ISDS. He specially said this on ISDS,

“ISDS does not undermine U.S. sovereignty, change U.S. law, nor grant any new substantive rights multinational companies” (White).

On the contrary, the Progressive Coalition for American Jobs (PCAJ) faces strong criticism from progressives and Democrats who believe that this group is not at all a ‘progressive’ group.

“Who are they? Are they getting paid? And this group will convince anybody of what?” asked U.S. Senator Sherrod Brown (D-OH). He went on to say, “There is zero progressive interest in this [TPP]” (McMorris-Santoro and Nocera).

“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 aid to a progressive House member who has doubts about the PCAJ. The aid added,

“The creation of a front group like PCAJ is a sign people pushing for a bad trade deal don’t have the votes to jam [trade deal] through Congress.”

Not to forget, the House Minority Leader, Nancy Pelosi, has privately cautioned her members in the House of Representatives to keep their powder dry in order to negotiate the most liberal deal possible (McMorris-Santoro and Nocera).

Additionally, Candice Johnson, spokesperson for the Communications Workers of America, said,

“It’s insulting.” She added, “You put progressive in your name and that’s going to convince people?”

Beck Bond, president of CREDO, the San Francisco-based activist organization had this to say,

“As far as I know, the only thing ‘progressive’ about this so called ‘Progressive Coalition for American Jobs’ is the first word of the groups’ name” (McMorris-Santoro and Nacera).

Finally, a top progressive consultant in Washington, D.C., Mike Lux had some resounding words on this trade deal and the PCAJ,

“I have been in the trenches working on TPP from the beginning, and as far as I can tell there is no one in favor of it except big corporations.”

Mike Lux added,

“Every progressive group and sector that works on economic issues – labor, consumer groups, enviros, the online groups, civil rights groups, you name it – is vehemently against TPP, so I don’t know what progressives are in this group’s coalition” (McMorris-Santoro and Nocera).

Conversely, 139 United States law professors signed a letter in March, urging Congress and President Obama,to protect the rule of law and our nation’s sovereignty by ensuring ISDS is not included” in the Trans-Pacific Partnership. The letter also stated,

“ISDS threatens domestic sovereignty by empowering foreign corporations to bypass domestic court system and privately enforce terms of a trade agreement. It weakens the rule of law by removing the procedural protections of the justice system and using an unaccountable, unreviewable system of adjudication” (Wallach and Beach, pgs. 7 and 11).

Another letter, signed by former judges, law professors and other prominet lawyers in May of 2012 warns,

“the foreign investor protections included in some recent Free Trade Agreements (FTAs) and Bilateral Investment Treaties (BITs) and their enforcement through Investor-State arbitration should not be replicated in the TPP” (Wallach and Beachy, pgs. 7 and 11).

Of course there have been many letters sent to President Obama and Congress on the TPP describing why it should be stopped and or opposed. Including the following letter, a letter sent in December of 2014 to the president by U.S. Senator Warren (D-MA) – member of the Senate Banking Committee – and Senators Tammy Baldwin (D-WI), and Edward Markey (DMA) urging the president not to include terms from past U.S. FTAs in the TPP. The letter adds,

“that could limit the ability of the government to use capital controls” (Wallach and Beachy, pgs. 7 and 11).

The Trans-Pacific Partnership (TPP) is a race to the bottom for the United States of america. It is especially harmful to the workers and consumers. If the TPP receives final approval from Congress and President Obama signs the agreement – ensuring that it is a cornerstone of his economic agenda – then he will have turned his back on progressives across the country. Passage of the TPP would mean that companies could use the ISDS and their new investor rights to raise costs of medications in the U.S. and depress the economy while those same companies can get large monetary payouts from the U.S. government. Therefore, the TPP is a bad deal and it will hurt the economy, environment, human rights, and health care. This deal must be stopped.

Join the effort here: Stop Fast Track! 

Works Cited

Heedham, Vicki. “Panel approves Obama trade powers.” http://www.thehill.com. TheHill, 23 April. 2015. Web. 24 April. 2015.

McMorris-Santoro, Evan and Nocera, Kate. “Progressives: We’ve Never Heard of This “Progressive” Group Backing Obama’s Trade Deal.” http://www.buzzfeed.com BuzzFeed News, 12 March. 2015. Web. 24 April. 2015.

Wallach, Lori and Beachy, Ben. “Analysis of Leaked Trans-Pacific Partnership Investment Text.” Public Citizen (2015): 3-5 Print.

Wallach, Lori and Beachy, Ben. “Analysis of Leaked Trans-Pacific Partnership Investment Text.” Public Citizen (2015): 4 Print.

Wallach, Lori and Beachy, Ben. “Analysis of Leaked Trans-Pacific Partnership Investment Text.” Public Citizen (2015): 5 Print.

Wallach, Lori and Beachy, Ben. “Analysis of Leaked Trans-Pacific Partnership Investment Text.” Public Citizen (2015): 8-9 Print.

Wallach, Lori and Beachy, Ben. “Analysis of Leaked Trans-Pacific Partnership Investment Text.” Public Citizen (2015): 7 and 11 Print.

Warren, Elizabeth. “the Trans-Pacific Partnership clause everyone should oppose.” http://www.washingtonpost.com. The Washington Post, 25 Feb. 2015. Web. 26 April. 2015.

Weisma, Jonathan. “Trans-Pacific Partnership Seen as Door for Foreign Suits Against U.S.” http://www.nyti.com. The New York Times, 25 March. 2015. Web. 26 April. 2015.

White, Ben. “Elizabeth Warren’s next target: Trade deals.” http://www.politico.com. POLITICO, 27 Feb. 2015. Web. 24 April. 2015.

Social Psychology Critique: DIVERGENT (2014)

newdivergentposterIn the film Divergent (2014), the society is divided into five factions that each person in that society must choose from when they reach a certain age, and they must commit to that faction for life. To help determine which faction each individual fits into as they mature into adults, each of them take aptitude tests.

riw-divergent-faction-symbolsEach faction represents a different human virtue. Abnegation the selfless, Dauntless the brave, Erudite the intelligent, Candor the honest, and Amity the peaceful.

article-2506551-1964A08400000578-809_634x497Tris Prior, however, does not fit into any of these factions. She fits into Abnegation, Dauntless, and Erudite. Therefore, she is Divergent. The film is focused around Tris Prior and her journey through this society, and into the civil war. Which broke out between disagreements on what should be done with the Divergent population and the true meaning behind this cohort.

In the film Divergent (2014), the leader of Erudite, Jeanine Mathews came to the conclusion that the Divergent population are a threat to their society. This leads to her entire faction supporting her and her decision to overthrow the Abnegation. I believe this is an example of groupthink (Sanderson, pgs. 301-303) because the entire faction sides with Jeannine Mathews and they do not dissent her decision. They also have unanimity in their opinions of Abnegation and of the Divergent.

I believe that the Erudite came to these conclusions because of their biased perceptions against the Divergent. None of them, however, have known an openly Divergent individual. For instance, Jeanine Mathews claims that Divergents want to destroy society, and that their entire existence goes against nature. All of which align with mirror-image perception (Sanderson, pg. 308). She says this because they do not fit into one faction but do sometimes fit into or with multiple factions, and therefore even Divergent individuals could also see Erudite as destroying society, and going against nature. However, the other factor leading to the events was the hostile media phenomenon (Sanderson, pg. 309) because the Candor-run media published news that was biased against the Abnegation. The Candor-run media was making accusations about abuse and neglect in the faction that happened to align with rumors started by the Erudite.

Finally, in the film Divergent (2014), the Erudite revolted and raised an army to attack the Abnegation. They did this by using the Dauntless faction as their pawns, and also as their soldiers. Again through groupthink, the Dauntless leaders decided to align with Jeanine Mathews and use a so-called “serum” on their own faction members. This so-called “serum” did two things, made the faction members who were not found to be worthy of elite titles to go into a simulation and to find out the Divergent population in Dauntless who were immune to the so-called “serum.” These Dauntless murdered all the Divergent found within their ranks. I believe this is an example of deindividuation (Sanderson, pgs. 295-297) because they would not have behaved that way if they were not in a large group.

I have read all of the books in the Divergent series and watched this specific film about six times. Thus, now, I must say that watching it again in a social psychological perspective it did change how I looked at this film. I saw underline themes that I did not pick up on before, such as how it discusses aggression, group process on decisions, and even factors that lead to conflict. The film also made a mental impact on me when it comes to deindividuation and murder or war.

divergent-movie-stills-tris-maggie-qI think the film Divergent (2014), was done well in catching themes for discussion on group influence, specifically deindividuation, groupthink, power of leadership, and biased perceptions. If one looked at this film differently than I did, they could possibly have seen a different set of themes to discuss. I chose group influence because of the faction system set up in their society, which inherently had problems. Thus, I looked at the social psychological problems caused by that system. I would recommend the entire Divergent series for students to watch. Divergent (2014) especially, because of how it sets up the playing field with explaining the factions and because of what I said before about how there are other themes than the one I choice to look at.

Unicameral Needs Your Voice on LB586, WorkPlace Protections.

Originally posted on Nebraskans For Equality:

OMAHA, NE – The Nebraska Unicameral Session for 2015 is almost over, just 10 days or less actually. It is crunch time in the Nebraska Equality Movement! Thursday, May 14th, the Unicameral will debate and vote on workplace equality. We need you to call or email your state senator in our state’s Unicameral. Don’t know who that is? You can click here: http://nebraskalegislature.gov/senators/senator_find.php Don’t know what to say or write? We have that covered too!  Read the next paragraph below, You can start with what’s written below and add your experience and name to it!

Dear (Your State Senator’s Name), LB586 adds Sexual Orientation and Gender Identity to the state’s workplace protections statute which already cover race, sex and religion. Discrimination against Nebraskans based on Sexual Orientation and Gender Identity is real. We lose talented Nebraskans to other states that treat their residents equally. We also lose the business opportunities…

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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.


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.*

Problem Facing America: Politics are not focused around Young Americans

In the United States, our politics on both sides of the aisle is not on the side of young Americans. Republicans claim the only way to grow the economy and secure a future for young Americans is to cut our domestic spending programs. Democrats claim the only way to grow the economy and secure the future for young Americans is to continue the same old policies pushed forth again and again. In the end, everything stays the same.

2015-02-18-EarningsbyLifeCycleHere’s the facts from the past 40 years via the Social Security Administration (SSA). SSA found that a typical employee, has the largest income gains between the ages of 25 and 35. However, the unemployment rate of 18 and 34 years old peaked at more than 13% in 2010 (doesn’t include underemployment or discouraged workers). While the average income increase for median earners fell to zero between the ages of 35 and 55. Finally, they found that incomes decline (“negative growth”) between ages 45 and 55.

During the recession, lower-wage industries constituted 22% of losses, but 44% recovery growth and higher-wage industries constituted 41% of recession losses, however only 30% of recovery growth, noted by the National Employment Law Project.  this caused an economic and perhaps even social crisis for young Americans are trying to enter or attempt to enter the workforce. Many of these young Americans are trying to get their first job to use their money to sustain themselves as they face the many challenges they have thrust upon them once they graduate high school. Many of them even use these jobs to help pay for their own education or to feed themselves while they are enrolled in college.

Now, they are not getting these jobs. Instead they are going to the people who before the recession were in middle-wage and higher-wage industries. These were people who had already made a life for themselves in many cases. Leading to young Americans with no avenue to work to start their lives to those who had good jobs now taking the jobs that use to go to young Americans just starting out.

Now, looking specifically at the jobs that were lost during the recession, Pew Research Center made some great points. the largest declines were in specialty trade contractors, construction 319, 800 jobs and local government, education 266,800 jobs. The largest gains have been in health care 1,481,400 jobs and food services and drinking places 1,385,400 jobs. Looking at these numbers you may notice that the second largest growing industry post-recession is also one of the industries that has the lowest pay and the least benefits for their employees.

2015-02-18-WhoOwestheMostAnother striking statistic, is the total amount of student debt owed, $1.3 trillion. Even further, according to the National Center for Education Statistics, the average amount owed for each graduate has risen from less than $10,000 in 1993 to more than $30,000 in 2013. With the bottom 25% of households owing 58% of student debt and the top 10% owing only 3%, according to the Pew Research Center.

Republican Message:

The new Congress is controlled by the Republican Party (GOP) and they could act on these issues and take meaningful actions. Instead, they seem to be focused on repealing Obamacare (ACA), rollback of immigration reform, and destroy agencies that protect the environment, consumers, workers, and taxpayers.

20141108_gdm333_10Specifically, on immigration the U.S. House took a vote of 236-191 on funding the Department of Homeland Security to February 27, until President Obama reverses his executive order on undocumented immigrants. The vote was poised at killing the President’s effort to enforce policies that limited deportations of people who aren’t criminals or serial immigration violators. One amendment to that bill even went as far as ending the Deferred Action for Childhood Arrivals (DACA) program. DACA stopped over 600,000 young undocumented immigrants from being deported and allowed them to work legally.

Progressive Confront:

Progressives have a plan to confront the Republican’s and the Democrat’s standard. The progressive plan is to regulate Wall Street, transform the U.S. global tax and trade policies (oppose TTP), enforce a progressive tax rate, curb perverse CEO compensation policies, revive anti-trust, equal pay for equal work, raise the minimum wage, paid sick leave, free community college (President Obama’s plan), 21st century infrastructure (President Obama’s plan), end the outrageous amounts of money in politics (Citizens United), and take advantage of the Green Energy Industrial Revolution.

international-maternity-leave-timeline-2013The plan includes supporting progressive legislators. Thus, people who disagree with the status quo should stand with U.S. Senators taking the lead on these policies such as Sen. Sherrod Brown, Sen. Jeff Merkly, Sen. Bernie Sanders, Sen. Elizabeth Warren. It also means standing with the Congressional Progressive Caucus in the U.S. House, who are driving the same ideas.

Fundamental change comes only when the oppressed make it impossible to sustain the old order. – Robert Borosage, Campaign for America’s Future

In Mika’s Opinion:

Young Americans are our future, thus politics needs to take a major turn towards that which will benefit them. Right now, young Americans are turned off by both political parties.

Why? Could it be that both political parties have not spent much time focusing on the needs of young Americans? Could it be that both political parties are stuck in their same old ways, pushing their same old proposals?

This is why I believe in the progressive plan, the plan for our future, that includes and focuses on young Americans. That recognizes the need to take a turn and make changes. The plan includes some of the old proposals that are still relevant for today but recognizes that we are in the 21st century and need 21st century solutions. The progressive plan even will tackle social issues that many young Americans want to see dealt with. Many of these issues are not even seen as issues by many young Americans but are for older Americans and still are being debated within the two major political parties, which also turns off young Americans

It’s time we realize that immigration isn’t a side issue, it’s a national priority.marriage_equaltiy_3_0

It’s time we realize that women’s issues are not side issues but a national priority.

It’s time we realize that lesbian, gay, bisexual, transgender, queer, intersex, and asexual (LGBTQIA) rights are not side issues but a national priority. 


*Source: Campaign for America’s Future*

*Source: Politico*