We Need Medicare-for-all NOW!

download (2)The Affordable Care Act (ACA) is working and is an improvement from what we had before. The healthcare law (ACA), ensures that up to 105 million Americans cannot be subject to lifetime caps by their health insurance plans. Because of the law, up to 17 million children with pre-existing conditions cannot be denied coverage or charged more. Specifically in Iowa, the law has allowed over 800,000 Iowans to receive at least one preventive service at no out-of-pocket cost.

The Affordable Care Act (ACA) is a definite improvement over the status quo. It extended health insurance to millions of people, a move which will save lives and improve the quality of life for many people. But it is not enough. – Richard Eskow

55ba7e6dc361883d318b45deI support Senate Bernie Sanders’ plan for Medicare-for-all single-payer health care system.

The Medicare-for-all or “Universal health care” plan consists of only one payer (a single-payer public agency) to pay for medical care. There is only one health plan for everyone that provides all medically-necessary care, and it would eliminate the unnecessary administrative activities.

The United States remains the only major country on earth that does not guarantee health care for all as a right. – Senator Bernie Sanders

Medicare-for-all single-payer system provides only one payer of medical bills, not the array of over 1,000 different health insurance companies with confusing plans that include terms such as “formulary” and “out-of-network.”

  • “Single-payer health care,” simply means that only one public (insurance) agency – that is publicly accountable and people pay into a single fund – that pays for medical bills.

Bernie’s model, which he introduced in the U.S. Senate, the “American Health Security Act,” calls for the right to healthcare for all. The plan has endorsements from several national unions and the AFL-CIO, along with many national healthcare advocacy organizations. His bill for Medicare-for-all single-payer system, would update and strengthen our nation’s healthcare system with the following:

  • An equitable tax structure, providing that the wealthy pay their fair share into a national healthcare system.
  • Union/company benefit plans would be maintained if desired, however only to provide extras other than the medically necessary care that would be covered for everyone.
  • Funding dedicated to ensuring that transitional benefits would be available for insurance industry and administrative workers who may be displaced.
  • Complete funding for community health centers, giving 60 million Americans living in rural and underserved areas access to care (Healthcare Now)

*there have been other versions of the single-payer health care system introduced in Congress*

Medicare for All is an urgently – needed next step, leading to a more humane and efficient health care system. – Richard Eskow

Many Americans do not realize that there is a difference between “health insurance” and “health care.” Clarification, “health insurance” is not “health care.”

  • “Health care” is a phrase which has traditionally referred to medical treatment.
  • “Health insurance” is a financial arrangement that collects funds to pay for medical treatment.

In America, the majority of Americans are covered through private health insurance, which they get through for-profit corporations. Many if not all of these corporations charge significant percentages for profit and their “overhead.”

The problem is this: Even when they [Americans] have health insurance, Americans are paying more and more every year for their actual treatment. – Richard Eskow

Even with health insurance, out-of-pocket costs of health care – including copayments and deductibles – are soaring.

  • According to Milliman’s most recent report the employee’s total cost of care increased by roughly 43% between 2010 and 2015. (Employer costs increased by nearly one-third.)

As we all know, for-profit health insurance is expensive and inefficient.

We [United States] spend significantly more for health care than any other developed nation. – Richard Eskow

For example, look at United Healthcare, they reported profits of more than $10 billion in 2014. That is just one year. Now, if you took that money and put it back into the system, you could provide medical coverage to more than one million people, and that’s even at our nation’s excessive rates.

bernie_on_single_payerExecutives of those companies have been big winners. Mark Bertolini, CEO of Aetna (the nation’s third largest health insurer) had a total compensation of $30.7 million in 2013, which was 131% higher than in 2012. Health Plan Week, a trade publication, said the CEO’s of the 11 largest for-profit companies were rewarded with compensation packages last year [2013] totaling greater than $125 million. Those companies include Aetna, Centene, Cigna, Health Net, Humana, Molina, Triple-S Management Corporation, UnitedHealth Group, Universal American, Wellcare, and WellPoint (Center for Public Integrity).

Basically, we are getting much less for our money. We pay more on a single person basis for care than our peers in other nations.

The following is the health expenditure per capita in U.S. dollars for several major nations for the year 2014 (WordBank):

  • Australia $6,110
  • Belgium $5,093
  • Canada $5,718
  • Denmark $6,270
  • France $4,864
  • Germany $5,006
  • Japan $3,966
  • Netherlands $6,145
  • Sweden $5,680
  • United Kingdom $3,598
    • Average for those nations: $5,245
  • United States $9,146

Private health insurance costs more, and delivers less than government-sponsored care. – Richard Eskow

tumblr_nqmseszzS11uvablzo1_1280Personally, living with cystinosis, I stack up medical bills quickly. However, I am on Medicare and Medicaid, which pays for all of those costs. I am frightened when I think about my future and how in the world I would be able to afford employer health insurance. The employer health insurance would need to pay for all of my medications and medical expenses. One of my medications alone costs $55,000 for a 30 day supply. That is outrageous!

Look at the “free market” in health care. There are only 11 major health insurance companies, and many of the others are owned by those 11.

One might even consider those health insurance markets “highly concentrated” under the Justice Department, according to a 2009 study.

For-profit pharmacy corporations, hospital chains, and provider practice groups are driving up costs in a system that provides an incentive to overcharge and overtreat patients. – Richard Eskow

Look at this, the government can and has managed healthcare delivery efficiently. It is called Medicare.

Medicare is more cost-effective than private insurer, and could serve as the foundation for a single-payer system. – Senator Bernie Sanders

“Medicare operates at lower overhead than private health insurance. Medical costs have increased more slowly for Medicare than they have for private insurance.”

It is a moral imperative that the United States join the rest of the developed world in guaranteeing all Americans the human right of health care by adopting the Medicare-for-all single-payer health care plan.

It’s time for a Medicare-for-all single-payer health care system!

Sign the petition! 

Other Sources: Five Reasons We Need Medicare For All
*Nothing in this post has been authorized by any candidate, candidate’s committee, or party*

Commit to Caucus for Bernie Sanders

On February 1st, 2016, I will be caucusing for Senator Bernie Sanders for United States President in the Iowa Democratic Party Caucuses, and this is why!

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

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

In the 60s, as a student and activist, Bernie was a front-line 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 will caucus for Bernie Sanders because he believes in real family values, values that strengthen the bonds of the family and improve the lives of our families.

  • 10435642_867506549971017_514175294279107342_nBernie cosponsored Sen. Kirsent Gilibrand’s FAMILY Act, which would guarantee every employee twelve weeks of paid family and medical leave.
  • Bernie also cosponsored Sen. Patty Murray’s Healthy Families Act, which would guarantee seven days of paid sick leave per year for American workers.

I will caucus for Bernie because he understands that to create decent paying jobs you must invest in the U.S. and our youth.

It’s even worse for young people. A recent study found that over 50% of young African-Americans and more than one-third of white and Hispanic youth are looking for full-time work. – Sen. Bernie Sanders

  • 11709501_863713060350366_1012888495097785532_nBernie introduced legislation which would invest $1 trillion over five years to modernize our country’s physical infrastructure, creating and maintaining at least 13 million good-paying jobs.
  • Bernie opposed bad trade deals such as NAFTA, CAFTA, permanent normal trade relations (PNTR) with China, and the TPP.
  • Bernie also introduced the Employ Young Americans Now Act with Rep. John Conyers. It would provide $5.5 billion in immediate funding to employ one million young Americans between the ages of 16 and 24.

I will caucus for Bernie because he understands the impact of income and wealth inequality.

In fact, inequality is worse now than at any other time in American history since the 1920s. . .  We live in one of the wealthiest countries on earth – and yet children go hungry, veterans sleep out on the streets and senior citizens cannot afford their prescription drugs. This is what a rigged economic system looks like. – Sen. Bernie Sanders

I will caucus for Bernie because he will fight to get big money out of politics.

Freedom of speech does not mean the freedom to buy the United States government. . . In a 5-4 decision in the Citizens United case, the Supreme Court essentially declared that corporations have the same rights as natural-born human beings. – Sen. Bernie Sanders

  • BernieSanders-FreeSpeechBernie introduced the Democracy Is for People constitutional amendment to overturn the Supreme Court’s Citizens United decision.
  • Bernie voted for the DISCLOSE Act to shine a light on the exorbitant amounts of dark money in our politics.
  • Bernie has even promised that any Sanders Administration Supreme Court nominee will commit to overturning the disastrous Citizens United decision.

I will caucus for Bernie because he will combat climate change and protect our environment.

We must transform our energy system away from polluting fossil fuels, and towards energy efficiency and sustainability. – Sen. Bernie Sanders

  • 11059916_873367072718298_5236429870077953044_nBernie led the opposition to the Keystone XL pipeline.
  • Bernie introduced the gold standard for climate change legislation with Sen. Barbara Boxer to tax carbon and methane emissions.
  • Bernie also secured $3.2 billion in the economic stimulus package for grants to reduce greenhouse gas emissions, in a program that has funded upgrades for more than 86,000 buildings and installed more than 9,500 solar energy systems.

I will caucus for Bernie because he will fight for a living wage.

The current federal minimum wage is starvation pay and must become a living wage. We must increase it to $15 an hour over the next several years.”

  • Bernie introduced a budget amendment to raise the minimum wage.
  • Bernie also introduced the “Workplace Democracy Act” to strengthen the role of unions and the voices of working people on the job.

*Nothing in this post was approved by any candidate, candidate’s committee, or political party*

Hardest Thing I’ve Ever Done


In second grade, there was a boy in my class, we would go to his house and play games together. At school, we played frequently during our recesses. I seemed to be drawn to him. He always stood up for me against the big bad bullies. He would hug me and tell me,

“Don’t cry, I won’t let’em hurt ya.”

At that age, I did not think that I was different or see that there was anything wrong. I had no idea what being gay meant. I was being me and he was my best friend, which is all I saw at the time.

Later, my family moved to Wahoo, NE, and I never spoke to him again. I was in the third grade when I first heard the word ‘gay.’ I did not understand what it meant, I was too busy playing and being a kid to worry about it. However, kids started calling me gay and a sissy because I was weak and I did not like what most of the other boys liked. I guess I seemed girly. In addition, I had feelings that I did not quite understand. I thought they were normal, so I did not pay much attention to them.

Around the end of the school year, someone called me a, ‘fagot.’ I cried and cried that day. I could not understand what it meant, but it hurt that people would call me these names. I started to feels as thought I was different. I did not know what they saw was bad or wrong with me.

In the fourth grade, I began thinking that I might be gay. I started having sexual feelings about boys. I tried to push them away and tell myself, “No, it’s wrong to think like that.” I started believing that I was sick, and depression set in. I had no idea what to do. I wanted to go back to second grade and be with my friend; he would make all the bad things stop. I tried to pretend I was sick all the time so I would not have to go to school or to leave early to get away from the bullying.

Fifth grade, my last year of elementary school, and first year at the new building in Wahoo, I was so happy. Everything was new, I was excited to have a chance to start over. I thought I could lose those feelings I’d been having. I was so hopeful.

As much as I tried not to be myself, I could no longer hide it. Somehow, my fellow classmates knew. I looked to the teachers to help, but they were very reluctant. I must be sick, I constantly told myself.

2ba79ae603b70e17759b2f9f956ca0b9Sophomore year at Wahoo High School, was sort of the best and worst year I had ever in Wahoo. I decided I could be ‘normal.’ I worked hard to open up to people and put myself out there. I very much wanted to be normal, to be like everyone else. I decided to try to find a girlfriend.

Thus, I knew my cousin had a friend who I also knew, and we had several things in common. I asked my cousin’s friend to go to the homecoming dance with me at my high school, along with my cousin herself and one other of my friends. It felt like a safe way to attempt to belong.

On New Year’s Eve, I was with my older sister and cousin, while we drank that evening, celebrating the promise of the New Year, I told them that I was indeed bisexual and that there was a guy I liked. My cousin and sister said,

“Yeah, we know.”

They poked fun for a bit, in a loving way, and we continued chatting as we always had. I finally felt like I could be myself.

The following day was a new year and I decided to live openly. I began to experience what living openly means. Including the pain of being gay in a small town high school in the United States and especially in Nebraska, where it was legal to bully and harass a fellow student based on their sexual orientation. To this day, there are no state or federal laws banning bullying or harassment based on sexual orientation or gender identity.

As an openly ‘gay’ student, I began to experience bullying and harassment in a different way, but I decided I would have to live with what was thrown at me. At the same time, I was beginning to feel the hurt manifesting from the fact that I really liked the boy I told my sister and cousin about. I knew the feelings I had for him would not be returned. I thought at the time that he was too perfect. During this time, I was learning for the information I had at hand, that gay and bisexual people do not get ‘perfect,’ and knew they never would.

Soon the bullying and harassment escalated to the point where I needed to leave Wahoo. I became very depressed and angry. I did not completely understand why. I just came out and learned from my research that I should be feeling better. Coming out always makes things better. Nevertheless, I did not feel much better. I was not happy many days. I still felt wrong in my own body.

One day after watching my older sister get her nails done, something happened. I felt that I would like to see how my nails would look painted. Thus, a couple of my friends and I painted my nails. I learned that I did love it.

Soon, I felt more comfortable and I started looking at the tighter jeans from Hot Topic. I knew guys were not ‘supposed’ to pain their nails or wear girly cloths. However, I wanted to wear them. I wanted to wear those things, and they made me feel more comfortable when I did. They also really scared me. I began having problems sleeping and could not stop thinking at night. I also became interested in other things to express myself such as choir, drama, and activism.

In drama class, while still living in Wahoo, I learned that I really like to do make-up, read plays, and act. My drama teacher was the most supportive. She taught me that it was okay to be myself and that included my sexual orientation and gender expression. Because I could not sleep at night, that is when I would end up staying up all night practicing for speech competitions, reading the poems aloud, and allowing the words to connect with my own emotions. Perhaps not the best for my academics, but it may have helped me psychologically.

DSC_0026In 2007, my family and I left Wahoo. Most of that summer we lived in a subdivision of Omaha. When school started, I moved in with my cousin and her family so I was able to attend school with her at Millard South High School. I met so many new people there. People there were finally accepting of me for who I was regardless of my sexual orientation or gender expression. I even met many other openly lesbian, gay, bisexual, transgender, queer, and asexual (LGBTQA) students. Millard South was a safer environment for me. I was able to open up and become the person who I truly was all along.

Millard South even offered many more academic opportunities than the small town school did. I was able to take part in the German program. I was able to thrive there, and I soon gained confidence in myself. I was even somewhat popular, although I attribute that to the fact that I was openly queer and ‘different.’ In many aspects different was good. I might not have been ‘normal,’ but I was accepted for who I was.

Students and teachers at Millard South actually thought something of me. They believed that I could do some awesome things in my future. I had a couple of teachers who believed in me especially when I did not believe in myself. They gave me encouragement. They told me to keep fighting for what was right. They believed in me when I really needed someone, when even my own family was not there for me. I will never forget all that they did for me and I hope I can repay them.

Junior year at Millard South flew bye and the next thing I knew, I was a senior. I was terrified of what would be in my future. However, I could not wait for the end of the year because I wanted to move on to college.

My new pride and confidence did not help me at home. My mother and her boyfriend acted as if they hated me. They probably did. She not only did not understand who I was, she seemed  not interested in trying to learn. Her boyfriend, who had been living with us since we lived in Wahoo, had said he wanted me dead. He truly hated me then and will always. He has never told me why and I do not care. They both thought I needed to see a psychologist.

On that particular issue, they were right. I needed to see someone who could help me understand myself. I had known for years that I was different and my time at Millard South allowed me to develop and embrace certain parts of my identity. I knew there was more, but I could not figure out what. I could not piece together why I felt that a part of me was incomplete.

Finally, I did see a psychologist, one that was at Boys Town. She was very nice and LGBTQIA+ friendly. I spoke with her about my research on LGBTQIA+ matters and laws that affect them. I spoke with her about my classes and the many issues. She understood that the problems at home were multi-facet and did have a lot to d with my mother and her boyfriend. She understood that some of the problems I was facing were related to being queer and dealing with the bullying and harassment. The sessions with her helped me to begin to accept a fact about myself that I had previously been unable to come to terms with. I was able to finally come out as transgender. I was able to identify the roots of some of the many problems and discovered more about my identity. I also realized that the only way to overcome the feelings of injustice I had was to continue to fight for my rights, as I had done in high school the year before.

At one of the sessions where my mother and I were at, I came out to her. I remember yelling,

“Well, I am fucking sick of listening to you cry about you cry about your problems! We are here about me! I am fucking transgender!”

That day forward, I began coming out to people. On October 11, 2009, I told the store manager at J.C. Penney that I was transgender and from that moment on, I would be identifying as female, using female pronouns, and prefer being addressed as Mika. I also began the process of coming out at school and requesting my teachers to address me the same.

d47Coming out as transgender was one of the hardest things I have ever done. It was so difficult because I was so scared. I knew my family did not like me being queer. I was worried about how my friends at school and work would treat me. I fully expected to be fired from my job.

Now, I wonder why I did not notice this sooner. Coming out actually opened my own mind to new possibilities. It helped me accept myself and I was able to improve my academics and work beyond what I thought I could.

It has been a long journey. Now, after nearly six years I am starting medical transition to assist me in confirming my gender. I recently started transgender hormone therapy. The medications I take are to assist in secondary gender characteristics. I take spironolactone (aldactone) to suppress the male sex hormone (testosterone) that my body does produce.  Having hypogonadism my body’s sex organs do not produce much testosterone. I also use estradiol (climara), which adds the female sex hormone (estrogen) to my body. Because of the hypogonadism, my body was never exposed to large amounts of the testosterone. Therefore, I was able to socially transition into my true gender much easier.

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.*

How Do You Live With An “Orphan” Disease?

Have you ever wondered what it is like to live with an “orphan” disease like cystinosis?


It is difficult but it is an amazing journey. The following information will help you understand what a person living with cystinosis must go through while growing up.

Cystinosis is a rare disease that primarily affects children. It is a rare genetic disorder in which continuous cellular accumulation of the amino acid cystine rises to toxic levels, resulting in irreversible tissue and organ damage if left untreated even for a short time. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, thyroid, brain, and white blood cells. Without treatments, children with the disorder develop end stage kidney failure at approximately age nine.

Cystinosis is treated symptomatically and ongoing, which makes it possible for patients (us) to live longer lives. Consistent care is essentialeven when the patient (we) look or feel fine. The disease does not rest. If a patient delay, miss, or stop taking medicine, cystine levels can rise very quickly. The damage caused by toxic levels of cystine cannot be reversed. *A kidney transplant is not a cure for cystinosis.*

MYN90450The following are ways cystinosis is treated:

  • High intake of fluids and electrolytes to prevent excessive loss of water from the body.
  • Sodium bicarbonate, sodium citrate, and potassium citrate may be administered to maintain the normal electrolyte balance.
  • Phosphates and vitamin D are required to correct the impaired uptake of phosphate into the kidneys and to prevent rickets.
  • Cystagon or Procysbi (cysteamine bitartrate)cystaran_374803
  • Cystaran (cysteamine eye drops)
  • Kidney transplantation

The disease first affects the kidneys and it is a primary concern to ensure they last as long as possible.



The kidneys are fist-sized organs, shaped like beans. They act as filters to clean waste (what’s left over from breaking down from food and your body’s other activities) from the blood. In addition to removing wastes from the bloodstream, the kidneys also make and regulate hormones and chemicals in the body. When the kidneys are not working correctly, the body can develop several problems, including: fatigue, bone problems, sleep problems, and anemia.

Dialysis may be needed if a donor kidney is not available, or if a kidney transplant fails. Dialysis serves as an artificial filtering system that mimics a person’s kidneys by removing waste from the blood.

microbeadsCystinosis patients (we) are now living longer lives because of the new treatments and advancements in medicine. Living longer means that cystinosis patients must transition from pediatric care to adult care. As a patient myself this is excellent news because we had have only a 20 year life span, now we have a 50 year life span. Once they become adolescents they must learn about treatment options, know their medications and side effects from those medications.

C._Everett_Koop,_1980sThis period is known as “transitioning,” which was inspired by Surgeon General C. Everett Koop. He described it as the “one major issue” for chronically ill adolescents that had not been adequately addressed by the healthcare system.

A consensus statement from pediatric and adolescent health professionals in 2002, in the journal Pediatrics defined the goal of transition:

“To maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate healthcare services that continue uninterrupted as the individual moves from adolescence to adulthood.”

There are many factors that affect the overall well-being of adolescents with cystinosis:

  • Medical/physical concerns
  • Psychosocial functioning
  • Long-term disabilities
  • Multiple hospitalizations
  • Treatment compliance
  • Comorbidities such as gastrointestinal complications with possible swallowing problems.
  • Hypertension (elevated blood pressure)
  • Photophobia (lights hurting the eyes) due to corneal crystalscystinosis
  • Visual impairment due to retinopathy (involvements of the back of the eyes)
  • Metabolic bone disease with skeletal deformities as consequences of rickets
  • Persistent polyuria (large urine output) in pre- and post- transplant patients
  • Endocrine involvement including diabetes and hypothyroidism (low thyroid function)
  • Various degrees of myopathy (muscle involvement) affecting strength
  • Delayed puberty (sexual maturation)
  • Male hypogonadism (low male hormone levels) and infertility (inability to conceive)


The transition process that Koop spoke about is broken down into three stages by their age. Early adolescence (12-15), late adolescence (15-18), and young and “emerging” adults (19-25).

cysteamine-bitartrate-figure-3In early adolescence, cystinosis patients (we) begin understanding their medications and taking responsibility. They should recognize what their medications look like and should be able to tell their parents and healthcare team the following:

  • Name of each medication
  • Dosage and schedule for taking each medication3aab3b39-52b6-4a79-9a5c-7baa7574f24f-03
  • Purpose of each medication
  • Side effects of each medication

Cystinosis patients (we) have the unique role of being their own advocates, and at this age they should learn how to self-advocate. Advocating for themselves will be crucial as they face many circumstances where they need to stand up for themselves in the healthcare field and in general. Parents should encourage children to practice self-advocacy while still supporting them in their decisions.

Often children and young adults with chronic illnesses may be hidden victims of bullying.

These are some potential bullying warning signs that we all should look for:

  • Loss of interest in school and extracurricular activities
  • Frequent complaints of illness to avoid attending school
  • Sudden decrease in academic performance
  • Few or no friends with whom he/she spends time with
  • Unexplained bruises, scratches, and cuts
  • Fear of going to school, riding the bus, walking to school, or taking part in organized activities with peers
  • A preference for a long or illogical route to school
  • Increased moodiness, sadness, or depression
  • Loss of appetite
  • Trouble sleeping
  • Anxiety or low self-esteem

Going to school with any illness can be daunting, especially with a serious “orphan” disorder. Cystinosis patients and their parents should not be intimidated by the “educational professional,” and the school administrators should NOT be intimidated by the parent! Patients and parents should NOT let teachers, support staff, or administrators tell them that a request is “impossible.”

Navigating the school system can be difficult living with cystinosis, and communication is key for parents and patients. Parents should get to know key individuals – including a child’s principal, guidance counselor, nurse, psychologist, social worker, AND ALL teachers (including those who teach special classes like art and physical education) as the school year begins. Parents should provide the school with packet of information about cystinosis.

Honesty is the best policy. Not sharing information does not allow understanding, and can create problems. Encourage school staff to ask questions. Urge them to ask questions, both academic and medical.

Cystinosis patients (we) are constantly faced with difficult situations, therefore young patients need to build a self-confidence. Building self-confidence is imperative for them. Having a self-confidence can help patients think positively and deal better with the daily stresses of having cystinosis.

Here are some ways that can be used to help build self-confidence:

  • Set standards for independence
  • Focus on building confidence, resilience, and strong communication skills
  • Recognize their child for doing a good deed, doing well at school, or completing a goal.
  • Point out their child’s strengths
  • Applaud their child’s efforts to improve on an activity he or she enjoys (even if it’s not the parent’s favorite!)
  • Listen to their teen when they speak and use open-ended questions rather than ones that require only a yes/no response

During transition, these young patients should spend a few minutes talking privately with their healthcare team at the beginning or end of each visit. This can help them feel more in control of their life and the cystinosis. They should start siting in (or picking up the phone) when their parents are making medical appointments or calling for prescription refills.

Sample Questions to Ask Your Medical Team

  • At what age does transition happen at this hospital?
  • Are there teen- or young adult- specific clinics?
  • Who will help coordinate the transition?
  • Do you have adult specialists that you recommend?
  • Why do you recommend them over others?
  • where are specialists located?
  • How will we meet them?
  • Do we need referrals?
  • Are there adult physicians/specialists who are knowledgeable about cystinosis?

Cystinosis patients face a unique set of stressors.

The disease can interfere with the patient’s comfort in moving toward independence and their parents may be resistant to a patient’s efforts to become independent.

  • In these situations the parent’s job is to provide information and resources to help adolescents think and live as independent adults.
  • One difficult, however necessary job of the parent is to seek a balance between “normal” adolescence and the unique healthcare needs that cystinosis patients (we) face.
  • Parents should start involving their teens in all health-related discussions (treatment choices and current concerns about their illness).
  • Work together, the patient and parent to teach self-care skills related to the patient’s illness (from medications to calling the pharmacy or scheduling doctor’s appointments).
  • Work on the development of coping skills to address problems or concerns that may arise related cystinosis.
    • Talking to friends about cystinosis
    • Participating in support groups
    • Expressing frustration or anger when needed
    • Using humor to defuse frustration or anger
    • Researching a problem
    • Participating in social support or religious activities

Medications are vital to cystinosis patients (our) survival. If they miss a dose of cysteamine or anti-rejection drugs, it could damage their health. Over time this can lead to the progression of the disease and rejection of the transplanted kidney.

  • Think about how much privacy is important to them when taking their medications
  • The patients need to speak honestly with their parents or their healthcare team if there is a problem with taking medications – whether because of side effects, a busy schedule, or sheer frustration. There may be options that could make things easier.
  • Parents need to understand that their teen will be taking many medications, to control cystinosis and to protect a kidney transplant.
  • If a cystinosis patient illness reaches an unstable state due to “nonadherence with treatment recommendations,” parents and healthcare teams should aim for discussion of what’s happening rather than arguing or punishment. The parent and healthcare team should decrease their frustration and replace it with support. 
  • Both the parent and the healthcare team should be honest about the results of not adhering to medication schedules, but avoid scare tactics. 
  • Communication is vital between the parent and patient. Talk about what the nonadherence is really about – taking medications can be a burden, it may interfere with social activities, the side effects may be too troublesome, etc.
  • Parents should know that not taking medications can also be a way of “acting out,” which other teens might express with skipping school, using drugs or alcohol. This can be a way of expressing rebellion or a way of trying to feel in control. The parent and patient must work together as a family and with the healthcare professionals to find a treatment plan that works for the young patient.


Cystinosis patients (we) must learn coping skills to deal with the side effects of Cystagon or Procysbi. These patients (us) cannot stop taking these medications. Cysteamine bitartrate is the lifeline for individuals with cystinosis. Cystinosis patients may often feel many side effects from their medications, especially the cysteamine bitartrate. As these patients reach adolescence and young adulthood, it becomes frequently tempting for them (myself included) to skip taking the medication due to the side effects, social concerns, and self-conscious feelings from the drug’s odor, and complications such as gastrointestinal distress.


Cysteamine bitartarte is vital, without it , the cystinosis will take its natural course, and more complications of the disease can happen at an accelerated rate. Patients may not be immediately aware of the damage to their health.

Living with any illness is difficult, being a teenager as well, makes life even more so. If a teen or young adult has five or more of these experiences, he or she may need more intense and immediate support than just talking with a friend or family member:

  • Feeling sad all or most of the time
  • Fast to get angry
  • Lose of interest in activities that were formerly enjoyable
  • Sleeping too much or too little
  • Missing school frequently or drop in grades
  • Worrying about being rejected or not doing something well
  • Feeling anxious and shaky
  • Feeling worthless or guilty
  • Feeling isolated; avoiding or not having friends
  • Having problems concentrating
  • Thinking about running away from home
  • Deliberately skipping medications

Parents and or patients should talk to your healthcare team and seek help if:

  • The patient seems overwhelmed with emotional issues related to living with a chronic illness. This could take the form of extreme sadness/depression, anger, or isolation/withdrawal
  • A pattern of “nonadherence,” or risky health consequences occur. Not taking Cystagon or Procysbi can result in the development of cystine buildup in all organs over time. Not taking immunosuppressants can result in acute rejection of a kidney very quickly, or cause a slow decline in kidney function due to chronic rejection. Sabotaging their health can become a powerful way to get attention or act out.

Young cystinosis patients must grow up learning all of the experiences of being a teen while they must learn how to take care of their health. 

  • These patients should spend a day or weekend independently preparing and taking medications and eye drops – without parents reminding them. Set up their own medication box for the week.
  • Parents should work with patients to start exploring academic and work interests that they want to pursue after high school.
  • Patients should keep a journal or write when they feel strongly about something. Write an essay about the best and most challenging things they have experienced (which might have nothing to do with cystinosis).
  • Patients should practice and try out different ways to tell “their” story may be useful for college and scholarship applications, or enable them to be an advocate for a cause they care about.

As cystinosis patients (we) become adults, they face many new challenges such as: furthering their education, exploring career paths, forming relations, experiencing different living situations, and dealing with car, home, and the big one health insurance.

Some call this age group young or “emerging” adults (18-25).

Jeffrey-Arnett-150“Emerging” adulthood – coined by researcher Jeffrey Arnett, Professor in the Department of Psychology at Clark University in Massachusetts, which used the term to describe the experience of 18-30 year olds. They are sometimes called millennials. They are unique, because in the United States and Europe, the years were once  thought of as a time of settling down, starting jobs, and building families; now it is a time of extended exploration, trying out educational and career paths, traveling, forming relationships, and experiencing individual living situations.

Consequently, growing up with cystinosis, young adults usually are eager to become independent and might be anxious about what lies ahead for them. They may also be facing challenges that their friends or healthy family members are not experiencing.

These young patients:

  • Negotiating what it means to them to be independent
  • Allowing friends and family to provide help to support when needed
  • Traveling, studying, moving away from home
  • Making educational and work choices
  • Taking complete (or more complete) responsibility for their health and health care

The following is a couple quotes by some cystinosis patients.

“Generally I’m pretty happy with my life . . . but it’s so much harder than anyone realizes.”

“It [cystinosis] totally affects how I feel about myself – for the best. I am proud of all that I do in spite of cystinosis. It gives me a story of triumph and hopes to share with others.”

Relationships and dating are even  bit more unique for individuals with cystinosis.

Just listen to these patients.

“An important issue is the smell of Cystagon. As I’ve talked with some of the young adults in our community. I’ve found more than one person who has stopped taking Cystagon when embarking on a serious relationship. You cannot talk about dating without approaching the subject of close contact, kissing, etc. and Cystagon. Quite frankly, if you’re with someone who is going to make a stink (no pun intended!) about your lifeline, he or she isn’t worth it.”

“I usually shared on the second or third date. My feelings is that if he doesn’t stick around, then he is not the kind of person I would want to be with anyway. One time, I waited too long, and they guy bolted shortly after I told him. Although he didn’t admit it, I felt that was why. By then, I was more attached, so naturally it hurt more.”

The Future

Sexual Reproductive Health and Cystinosis

by Dr. William A. Gahl and Dr. Galina Nesterova, National Institutes of Health (NIH)

Adolescents and young adults with cystinosis are faced with a challenge of sexual maturity and reproduction. If cystinosis is untreated people nearly always exhibit late sexual maturation (puberty).

Cystinotic males reach puberty at about 16-17 years old, and may demonstrate a primary decrease in testosterone (the hormones produced by the testes) due to cystine accumulation in the testes. Poorly treated males exhibit high levels of luteinizing hormone and follicle stimulating hormone (other hormones needed for sexual maturation), as compensation for the low production of testosterone by the testes. Male patients benefits from testosterone supplements to restore secondary sexual characteristics such as facial hair growth, muscle mas, and increase in testicular (testes) size.

The ability to have an erection (ability to have sexual life) apparently remains intact, no cystinosis patient is known to have fathered a child.

Cystinotic females poorly treated reach puberty at about 14-15 years old. Ovulatory cycles and gonadal endocrine parameters are normal in females, and several successful pregnancies and deliveries have occurred in women with cystinosis; the children have all been completely normal.

It is recommended that women with cystinosis withhold cysteamine therapy when trying to conceive or during pregnancy. Currently, there is no data o the teratogenic effects (risk of birth defects) of cysteamine in humans.

*Adapted by Mika J. Covington to fit word limit.

Cystinosis patients face challenges when it comes to education.

They have many doctor’s appointments, lab visits, and sometimes hospitalizations all forcing them to miss school.

The Rehabilitation Act of 1973 (Section 504) and the Americans with Disabilities Act of 1990 (Title II) prohibits discrimination based on disability. “Disability” can include “invisible” conditions like cystinosis, and includes more “obvious” disabilities such as vision problems, learning disabilities, difficulty walking, etc.

Universities and colleges are required to have an Office for Students with Disabilities (actual names will vary). Cystinosis patients should consider documenting their health condition with their educational institution. However, if the patient doesn’t document their healthy condition ahead of time, their professors and administration will not be required by law to make special exceptions.

Additionally, new federal regulations, require insurance offered by universities and colleges to offer the same coverage as commercial plans – such as not imposing limits on lifetime costs or pre-existing conditions.

Go here for more information: http://www.ed.gov/ocr/transition.html

Employment and Insurance with Cystinosis

Cystinotic individuals entering and who are in the workforce may experience a variety of issues and concerns. Career choices for young adults with cystinosis should be based on their intellect, ability, interests, and life goals. These individuals (us) are not limited in choice of employment and work in a variety of professional and technical jobs.

How should cystinotic individuals handle interviews? First, they should understand all the state and federal laws related to questions that the employer can legally ask (www.ada.gov or www.wwoc.gov).

Should an applicant disclose information regarding their cystinosis at the interview? Usually, no. Sharing this information about their cystinosis can put both the interviewee and the employer in a difficult position. The decision to hire should be based primarily on the individual’s ability to perform the tasks of the job.

Health Insurance

Health insurance is confusing for most people, especially for people dealing with a serious illness. Cystinotic individuals will need to have a vast knowledge about health insurance. They should have the answers to these questions:

  • Does the plan cover your prescriptions (anti-rejection, Cystagon, Procysbi)?
  • Are your medications (anti-rejection, Cystagon, Procysbi) 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? Cystagon, Procysbi, and Cystaran will likely require extra steps.
  • 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 ?
  • What does it cost to go “out-of-network”?
  • For medications that may not be FDA approved, what will be the cost to you?


Cystinosis patients should understand the basics of the many laws that assist them in the workplace and with their health insurance. Go here for additional information: www.younginvincible.org

The following are brief descriptions of some of those laws:

  • Section 2714 of the Affordable Care Act of 2010 (ACA aka Obamacare), requires all plans offering dependent coverage to allow individuals up to age 26 to remain on their parent’s health insurance.
  • Section 2301 of the Reconciliation Act of 2010, includes a requirement for existing health insurance plans to provide coverage for adult children up to age 26 and eliminates the requirement that adult children be unmarried. The extension also means that adult children do not have to be in college full-time to maintain under their parent’s coverage. The following is a resource for information is the Commonwealth Fund (www.commonwealth.org).
  • Consolidated Omnibus Budget Reconcilation Act (COBRA) of 1986, allows you to continue your insurance coverage for up to 18 months through your employer if your job is terminated or your hours are reduced (www.cobrainsurance.com).
  • Americans with Disabilities Act (ADA) of 1990, requires that employers to provide reasonable accommodations for individuals with disabilities who can perform the essential functions of the job (www.ada.gov).
  • Ticket to Work and Work Incentives Improvement Act. If you receive Social Security Income or Social Security Disability Benefits, This law may allow them to work and continue some of their insurance benefits. It also has a voucher system, where they can gain rehabilitation and other services to assist them in getting a job (www.ssa.gov).


*This blog post is dedicated to all those fighting “orphan” diseases including my sister Mary Covington, who like myself lives with cystinosis.


This blog post used information from an amazing resource, “Bridge to the Future,” a transition guide for teens and young adults with cystinosis and their families, created by the Cystinosis Research Network. Additional information used within this blog post came from the website http://www.knowcystinosis.com. I, Mika J. Covington, take no credit for collecting and putting together any of the information herein. However, I, Mika J. Covington, do take credit for the addition of my opinions and summing up some of the information here within this blog post from the sources listed above.