Drug Laws Cause Problems for People Carrying Medicines to Treat Chronic Illnesses

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It’s fairly common for people with chronic illnesses to carry medicines, and it certainly is legal to do so. But most of us are not aware that there are local laws governing how we are supposed to carry them.  Presumably, these laws exit to assure we are not carrying drugs that are illegal or could harm others. If we don’t carry our meds the “right way,” we could wind up in an uncomfortable situation with law enforcement.


To protect ourselves from a misunderstanding with police when carrying medicines, we must:

1. Carry proof of what the medicines are;

2. Prove the medicines have been prescribed to us by a medical professional;

3. Know and follow the different regulations governing the carrying of medicines for each of the states where we live, work, and travel; and

4. Take special care when leaving home with drugs that are on the controlled substance list.  The rules for carrying these drugs are quite strict, and carrying these drugs outside of their original container and without the attached prescription, can be a felony crime in some states—even if the medications have been prescribed legally by a doctor.

The problem...

Making matters worse for people with chronic illnesses, most of us lack the information we need to follow the laws.  There is little if any information accessible to the public about the laws involving the carrying of medications.  The laws vary from state to state and doctors and pharmacists rarely inform patients about the legal way to carry their medications. 

The little-known laws governing the carrying of legal medications

I have asked medical professionals and law enforcement officers if they could explain the laws governing the carrying of legal drugs, and all have been foggy on the details.  It appears the government has neglected to educate the public, medical professionals, or even law enforcement officers on our rights and obligations when carrying medications, despite how common it is for people to carry medicines to treat both chronic illnesses and temporary sickness (like a cold or flu).

And yet, the consequences of carrying medications without proof that they are legal can be quite uncomfortable. The police may suspect you of abusing or selling drugs illegally—since they may not be able to identify the difference between legal and illegal drugs. You could be arrested, fined, and even jailed–at least until you come up with proof that your medications are legal.

What are the laws governing the carrying of medications?

The answer depends on the state you are in. Some states require all medications to be carried in their original containers, with prescriptions labels attached.  Other states require only controlled substances to be carried in their original prescription containers. Still other states allow medications to be in any container, as long as you can present a script from a medical provider if questioned.

Drugs are also regulated at the federal level through the Comprehensive Drug Abuse Prevention and Control Act of 1970 (Controlled Substance Act of 1970).  But the federal law deals almost exclusively with controlled substances, leaving flexibility for the states to decide how people should carry both controlled and uncontrolled drugs that are legally prescribed to them.

I tried to find out the laws concerning the carrying of medications in New York, where I live, and had a difficult time. I found pages of dense text about drug laws, requiring anyone searching for the legal way to carry their medications to muddle through lots of obscure legal language.  Most of the regulations address illegal drugs and very little address how to carry legal medications.

I called my local police precinct, and the police officer I spoke with did not know the details of the New York State laws. Instead of providing the actual details of the laws, the officer provided me with anecdotal advice from her own personal experiences with a young daughter who needs to carry medications (her daughter carries medicines in their original containers).  I followed up with my family’s doctor, who was also unclear about the state laws.

It seems the drug laws are weak in protecting people carrying medications to treat their illnesses. The focus of the laws are in catching the “bad guys” using and dealing drugs illegally, with little regard to the innocent people who are unjustly suspected.

How to Carry Medicines

  If practical, the way to raise the least suspicion is to carry medicines in their original bottles, with prescription labels attached, and to carry photo identification.  Over-the-counter medicines should be carried in their original bottles as well.  If you have large bottles, you can ask the pharmacist for a smaller container with the prescription attached that you can put a few doses in.  For over-the-counter drugs, you can buy the smallest bottle/packaging to carry with you when you are out of the home.The date of the prescription has no legal consequence, so it does not matter if the script has expired.  The expiration is only there for information about the freshness of the medications.How to carry meds

Some of us have 3, 4 or more medicines we need to carry with us.  To carry each of these in their original prescription bottles—even if we use smaller bottles—can be cumbersome. It’s much easier to carry a small pill case with one or two doses of several medicines that can be tucked in a front pocket.

When it is not practical to carry the original containers of medications, the next best way to protect yourself if you are confronted by law enforcement is (more…)

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The ACA Leaves some People with Chronic Illnesses Behind

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Many with chronic illnesses are counting down the days in anticipation of January 1, 2014– this is the day the Affordable Care Act rolls out its most significant changes.

Healthcare for Everyone - Ashoka Photos 2009

Ashoka Photos 2009

On that day, health insurance will be more accessible and affordable for this group of people, who have routinely been denied coverage or charged the highest rates because of their health conditions.  The ACA does not allow insurance companies to deny coverage or charge higher premiums for people who are sick. The law gets rid of caps on how much insurance companies will pay for their care annually and over their lifetimes.  We can also look forward to better management of chronic illnesses, free preventative care, more generic drugs, and a better insurance appeal process–to mention just a few changes coming soon through the ACA.

Unfortunately, not all people with chronic illnesses will be enjoying these benefits on January 1st–the ACA falls short of creating universal healthcare, leaving too many without the medical care they desperately need.   Here is a look at who is falling through the cracks of the ACA.

Excerpt from The Affordable Care Act: How the Law Helps (and Doesn’t Help) People with Chronic Illnesses. Click here for the full article.


Who is Falling Through the Cracks?


1. Those who pay the mandate 

In Effect: January 1, 2014

Even with the ACA, some people may still find the cost of health insurance prohibitively expensive. However, health insurance will be mandated, so those who do not buy it may need to pay the penalty. There is no healthcare provided with the payment of penalties.

Tax penalties for not owning a health insurance policy

  In effect: January 1, 2014

The penalty for not having a health insurance plan with minimum essential coverage starts in 2014 and increases incrementally through 2016:

    • 2014: 1% of income or $95 per adult (whichever is higher)
    • 2015: 2% of income or $325 per adult
    • 2016: 2.5% of income or $695 per adult
    • Family penalties: The fee for children who do not have health insurance is half the adult amount. Fees are capped for families– the most a family would have to pay in 2014 is $285.
    • Fees are paid when filing income tax returns.

2. Some immigrants

    • Undocumented immigrants are left out of both the benefits and the mandates of the ACA. They cannot buy health insurance on the exchanges, do not qualify for any health subsidies, and cannot get Medicaid.  The only healthcare options available to undocumented immigrants are to get it through an employer; pay full price for private individual insurance; pay for medical services without insurance; or resort to visiting emergency rooms.
    • Newly documented immigrants are eligible for all the benefits of the ACA, and are also subject to the tax mandate if they do not have a health insurance policy. There is a 5-year waiting period to qualify for Medicaid, although some states have waived the 5-year waiting period for children and pregnant women.

3. Residents of states rejecting Medicaid expansion

The ACA increases the eligibility for Medicaid to include people making up to 138% of the federal poverty line (FPL).  People making between 100% and 400% of the FPL are entitled to subsidies for health insurance in their states’ exchanges.  However, a gap in coverage occurred when the Supreme Court made it optional for states to expand their Medicaid programs in their 2012 decision on the ACA.

To date, there are 15 states refusing federal funds to expand their Medicaid programs, and several more who are still deciding whether to participate in the expansion.  The ACA was not amended to accommodate for the Supreme Court ruling, leaving a potential gap in coverage for people in states rejecting Medicaid expansion. People in those states making less than 100% of the FLP may not qualify for any help—neither Medicaid nor a subsidy to buy insurance on the exchanges.  To fix this problem, the ACA would need to be amended.

4. People with “grandfathered” health plans 

Both individual and employer plans in effect before March 23, 2010, are “grandfathered” and exempt from some of the ACA’s rules and protections.  Grandfathered plans must still follow some of the rules, including coverage for dependents under age 26 and the elimination of lifetime spending caps. But the grandfathered plans are exempt from other requirements.  Grandfathered plans:

    • Are not required to provide free preventative care;
    • Do not have to offer a package of “Essential Health Benefits;”
    • Can impose annual spending limits on individual health plans; and
    • Can refuse to cover people with pre-existing conditions.

Grandfathered plans can be a problem for people with chronic illnesses. In 2013, 36 percent of employer plans were grandfathered.  Luckily, health insurance plans are expected to lose their grandfathered status over time as employers buy new healthcare policies (Kaiser Health News.)

5. People who are exempt from the mandate to have health insurance (but may still not have health insurance).

The following groups are exempt from the mandates and benefits of the Affordable Care Act:

    • People who would need to pay more than 8% of their income for the bronze-level (lowest level) plan in their state’s health insurance exchange, after taking into consideration any employer contributions or health insurance tax credits;
    • Undocumented immigrants;
    • People in jail;
    • Members of Indian tribes;
    • Members of religions opposed to health treatments available through health insurance plans (applies only to specific religions);
    • Income is below level required to pay taxes; and
    • Individuals in hardship situations (as defined by Health and Human Services)
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The Affordable Care Act Brings Welcome Benefits to People with Chronic Illnesses

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Excerpt from The Affordable Care Act: How the Law Helps (and Doesn’t Help) People with Chronic Illnesses. Click here for the full article.


doctors with patient medium

Healthcare Pre-ACA

People with chronic illnesses in the United States have suffered greatly under the country’s broken healthcare system which has been in desperate need of reform for decades. Too many people have gone bankrupt trying to cover enormous medical bills; the high cost of prescription drugs means some are forced to choose between paying for food and buying life-saving medicines;  health insurance companies, the real “death panels,” have denied life-saving treatments and medications to people with chronic illnesses.

Under pre-ACA policies, people with chronic illnesses have faced incredible barriers to obtaining and keeping health insurance.  They have been more vulnerable to maxing out annual and lifetime caps on payments for their treatments; insurance companies have charged higher rates to people who are sick or have denied them coverage all-together; and, those who have lost their jobs due to illness have often lost their employer-provided health insurance as well.

The figures are heartbreaking.  About 25 million people with chronic health conditions are uninsured—2 million of these are children.  An estimated 60 percent of uninsured people with chronic illnesses delay care because they cannot afford it (healthcare.gov). The Institute of Medicine estimates that someone in the United States dies from lack of health insurance every 30 minutes (Harvard Gazette, 2009).

None of this suffering is necessary. While the Affordable Care Act of 2010 is imperfect, it is a definite improvement for people with chronic illnesses. There are some dramatic changes starting on January 1, 2014, which are sure to ease the many problems people with chronic illnesses have encountered with healthcare in the United States.

How the ACA Helps People with Chronic Illnesses:

 The ACA includes many changes to healthcare, some quite noticeable and others more obscure. While this is not an all-inclusive list, these are some of the main changes people with chronic illnesses can expect with the ACA.


Children under the age of 19 can no longer be classified as having “pre-existing conditions”In effect: now

Among of the first parts of the Affordable Care Act to go into effect was something that few could disagree with–insurance companies could no longer deny coverage or charge more money to cover sick kids.  Before the ACA was passed in 2010, children with chronic illnesses with a lapse in health insurance coverage could be denied future coverage. Parents worried about losing health insurance for their sick kids if they ever lost or changed their jobs.


Adults age 19 and older can no longer be classified as having a “pre-existing condition”    In effect: January 1, 2014

Starting in 2014, the same protection now existing for children with chronic conditions will apply to adults as well.  Adults with chronic illnesses will no longer be denied insurance policies and they will no longer be charged higher insurance premiums because they are sick.


Children can stay on their parents insurance until the age of 26 In effect: Now

This is true regardless of whether or not an adult child is married or enrolled in school.


More generic drugs  In effect: now

The ACA allows the U.S. Food and Drug Administration to approve more generic medications.  These drugs tend to be less expensive than their brand-name equivalents. The ACA mentions biologic drugs specifically—which is a group of newer medicines used to treat several autoimmune disorders. The ACA states that after 12 years on the market, a generic equivalent of a biologic can be made. Before the ACA, there was no time limit for how long a pharmaceutical company could hold exclusive rights to produce these expensive medications.


Annual limits on people’s out-of-pocket medical expenses
In effect: January 1, 2014 January 1, 2015 (delayed implementation)

Individuals with insurance policies will have a total $6,300 limit on their out-of-pocket expenses for deductibles and co-pays, including prescription drugs.  Families will have a $12,700 limit on out-of-pocket expenses. The out-of-pocket limits are in addition to health insurance premiums.


No more life-time or annual caps on how much insurance companies will pay for medical careIn Effect: Now (some insurance companies have waivers until 2014)

The ACA ends the annual and life-time caps insurance companies will pay for an individual’s medical costs for “essential health benefits.”  Essential health benefits cover most costs associated with chronic illnesses, including but not limited to hospitalizations, management of chronic illnesses, preventative care and prescription drugs.


Lower-cost healthcare coverage

  • Expanded Medicaid In effect: January 1, 2014

In participating states, Medicaid will be expanded to cover individuals and families making up to 138% of the federal poverty line.  However some states have decided not to participate in Medicaid expansion. To see if your state plans to participate in the Medicaid expansion program, see theMedicaid expansion map. Keep in mind that this map is constantly changing as states that have been reluctant to participate in Medicaid expansion come on board.

  • Subsidies for health insurance on the state exchanges  In effect January 1, 2014

Families making between 100 and 400 percent of the federal poverty level (up to $45,960 for an individual and up to $94,200 for a family of four in 2013) are eligible for a health coverage tax credit on a sliding scale.


Insurance provides free preventative care (no co-pays or deductibles)
In effect: now

Under the ACA, there are no deductibles or copay costs for a number of preventative care visits and exams. Plans purchased before March 23, 2010 are “grandfathered in” and can still charge for preventative care.


Essential Health Benefits (EHB) included in health plans sold through the Exchanges
In effect: January 1, 2014

All plans sold in the health exchanges must cover certain benefits called “Essential Health Benefits.”  Plans that were bought before March 23, 2010 are not required to cover EHB’s. EHB’s include:

    • ambulatory patient services
    • emergency services
    • hospitalization
    • maternity and newborn care
    • mental health and substance use disorder services, including behavioral health treatment
    • prescription drugs
    • rehabilitative services and devices
    • laboratory services
    • preventive and wellness services
    • chronic disease management
    • pediatric services, including oral and vision care


Chronic disease management

in effect: January 1, 2014

One of the focuses of the ACA is to improve the health of people with chronic illnesses and decrease the costs of treating their health conditions.  The law seeks to achieve these goals by:

      • Coordinating medical care between the different doctors and facilities treating the same patient;
      • Reducing the duplication of medical tests–if one doctor orders a test, the results are shared with all providing care for the patient;
      • Providing education to people with chronic conditions;
      • Collecting data that measure quality of care and outcomes;
      • Encouraging “evidence-based care,” which includes tests, treatments, and medications with proven track records for being both effective and  cost-efficient; and
      • Medication management.
      • Some of the strategies in the ACA for managing chronic illnesses are controversial because similar versions have had mixed results in the past.


The coordination of care has similarities to the old HMO models, and “evidence-based care” has been used in the past by insurance companies to deny payment for services prescribed by physicians.  However, proponents of the ACA insist that the techniques used in the ACA will be different and better than the older models.Changes to the insurance appeal process.


The ACA provides reforms to the appeal process including:

  • Quicker appeals for  urgent care In effect: now

Decisions for “urgent medical situations” must be made within 72 hours.

  • A new federal external review process In effect: January 1, 2014

The ACA creates an external review process for appeals which could make decisions more consistent and fairer.  Regardless of what state a person lives in or which insurance policy they have, the same rules will apply.


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504 Plans for College Students with Chronic Illnesses

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Excerpt from
504 Plans. Click here  for the full article.

Universities and colleges  provide accommodations for students with qualifying disabilities.  But there are differences in the way things are handled at the post-secondary level compared with high schools.  Here’s what you need to know:

  • At the college level, it is up to the student to decide whether to disclose that he or she has a chronic illness.  However, in order to receive accommodations, students need to contact the Office of Disabilities—or department with a similar name—and let them know about their illnesses and the accommodations they need.  This is different than in the elementary and secondary school level, where schools are responsible for identifying which students require plans and accommodations, and are mandated to meet those needs.
  • Students will need to have forms filled out by their doctors providing evidence of their illnesses, and proving that their illness qualifies them for accommodations. These forms are provided by the school.
  • The accommodations offered at the post-secondary school level are more limited than in grade schools. Primary and secondary schools are responsible for providing students under the age of 18 with a “free and appropriate education (FAPE).”  Under FAPE schools must modify their policies and requirements to fit the needs of students with disabilities. Colleges are not held to the same standard–they are not required to modify their policies or academic requirements.  While post-secondary schools cannot discriminate against students based solely on disability, they are allowed to deny admission to students who do not meet their academic standards. Once admitted, students are expected to complete the work and exams associated with their classes.  However, students with disabilities are not left completely on their own—colleges are required to provide accommodations that help them meet the academic requirements.
  • Students over the age of 18 are adults, and have the right to privacy independent of their parents.  As such, their parents are not allowed access to their health or academic records and are not allowed to make decisions for their children. If students want their parents to participate and have access to their records, they can sign a waiver under the Family Education Rights and Privacy Act (FERPA).  Students can rescind the waiver at any time. Colleges often encourage their students to take charge of their health and academic needs, as a step toward becoming independent adults.  However, students may still want a waiver in place in case of an emergency.
  • When a student requests accommodations, only the disability coordinator needs to know about his/her medical conditions.  School staff and professors are given a list of accommodations they must follow that does not include the student’s diagnosis. It is up to the student to decide how much more information, if any, to disclose.
  •  Universities vary in how well they accommodate their students with chronic illnesses and other disabilities.  Some schools are more sensitive to the needs of their students and have systems already in place that can make things easier.  Students may want to consider how well a university provides for its students with disabilities when deciding where to attend school. (campus explorer).  Look at college websites and brochures for their policies and programs. You can also call the school’s Disabilities Office for information before you apply.
  • Students at the college level are often expected to be proactive in requesting and implementing their accommodations.  For example, if a student would like a class recorded, he might be expected to buy the recorder and ask classmates or the professor to record the class.
  • There are no I.E.P’s at the college and university levels.  Universities and Colleges are still required to offer 504 plans (if receiving federal funding), or plans consistent with the ADA.

504 Accommodations at the College Level

The accommodations at colleges and universities are more limited than those provided in secondary schools.  They focus on helping students with 504 plans meet the requirements of their chosen programs, and providing accommodations related to a student’s medical needs. Here are some examples of accommodations relevant to students with chronic illnesses at the college level:

  • Extra time to take exams.
  • Stop-the-clock testing.  If the student is not feeling well, they will be able to finish the test at a later time.
  • Reduced course-load, and allowing extra time to complete a degree program.
  • Extra time to hand in assignments due to illness.
  • Ability to tape record classes.
  • Ability to leave and rejoin class to take care of medical needs, including use of bathrooms.
  • Ability to carry and take medications.
  • Students are allowed to take college admissions exams with accommodations (SAT, ACT, LSAT, etc.). Students would contact the administrator of the test, and the test location, in advance to ask for accommodations.
  • Colleges and Universities DO NOT have to provide accommodations that:
    • Create an undue financial or administrative burden on the school;
    • Fundamentally alter the school’s academic program; or
    • Request personal care–like help with bathing or eating (Disability Rights California). 

Appeal Process at the College and University Level

If your school refuses to give you the accommodations you need or if you believe the school has discriminated against you on the basis of your illness, you can appeal the decision or file a grievance.  Here’s how:

  • Start by discussing the problem with the Office of Disabilities:  Sometimes, issues can be resolved without having to file a formal grievance.  Visit the Disabilities Office and try to work out a solution together.  If you cannot solve the problem with the school, it may be time to file a formal grievance with your college.
  • File an internal grievance/appeal with your college:  Each school will have its own process for filing appeals related to 504 plans and complaints of discrimination.  Information on where to file a complaint will likely be listed on the college’s website or in catalogues and brochures.  The college will review the 504 plan decisions and investigate accusations of discrimination.
  • File a complaint in Federal Court:  If you are still not able to resolve the dispute, you can file a lawsuit in Federal Court.
  • File a Complaint with the U.S. Department of Education Office of Civil Rights (OCR):  OCR oversees compliance with Section 504.  You can fill out a complaint form with OCR, and the agency will investigate the complaint.  You can file a complaint with OCR at any time, even if you are in the middle of a hearing or during a court action.
  • Contact a lawyer or parent advocate at any time: If you run into any difficulties at any point and feel that you need professional advice, you can consult a lawyer or parent advocate. Some charge fees, but a few offer free services. Here are links to some organizations that can connect you with lawyers and advocates specializing in helping students with disabilities, including chronic illnesses:
  • Advocacy for Patients with Chronic Illnesses: A nonprofit that provides free legal services on issues related to chronic illnesses.
  • Wrightslaw: A law firm specializing in special education rights.  They have an extensive list of lawyers and parent advocates on their website.

LINKS to College information:

Students with Disabilities Preparing for Postsecondary Education: Know Your Rights and Responsibilities. U. S. Department of Education.July 2002

Rights of Students with Disabilities in Higher Education: A Guide for College and University Students. Disability Rights California. July 2012, Pub #5309.01. 

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Misconceptions about Students with Chronic Illnesses

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Misconceptions about students with chronic illnesses influence the way teachers and school administrators view children with chronic illnesses. The following are some misconceptions we need to dispel if we are to help our students:  Excerpt from  Aiming for an Equal Education…Despite Our Illnesses – Rachel

 When I was diagnosed with ulcerative colitis (an immune disorder) and migraines with auras, and later, when both of my sons developed various chronic illnesses in their elementary school years, our well-intentioned friends came to us with their sympathies and a host of information about what they had heard caused and cured our illnesses. At the risk of offending these well-intentioned friends, much of what they told me was pretty sketchy.  Far too much of the information circulating comes from unreliable sources, old-wives tales, and rumors passed around so long that they are accepted as truths. The lack of understanding about chronic illnesses is unexpected, considering how many people have them.  Yet, I have to admit that even I have been guilty of holding some misperceptions, particularly before my kids and I developed illnesses ourselves. Chronic illnesses are complex, and there is still a lot to learn about what causes them, how to best treat them, and why the symptoms and outcomes can differ from person to person.

The misperceptions that circulate around our society influence the way teachers and school administrators view children with chronic illnesses. Misperceptions can greatly affect whether children are given the accommodations they need, and for which they are entitled to, under federal laws protecting students with chronic illnesses. (Section 504 of the Rehabilitation Act and the Americans with Disabilities Act).

The following are some misconceptions we need to dispel if we are to help our students:

1. If You Don’t “Look” Sick, then You Aren’t Sick

When a teacher finds out he will be teaching a student with a chronic illness requiring special accommodations, he might anticipate his student will be in a wheelchair, walk with a limp, or have tubes and equipment attached to her body.  Some people with chronic illnesses do need equipment or have visible symptoms, but many more do not.  Though people may be very sick they often do not have noticeable symptoms. For this reason, chronic illnesses have been referred to as “invisible illnesses.”  I met a young man who had a serious autoimmune disorder of the liver (Primary Sclerosing Cholangitis). This young man’s liver was deteriorating and he was on a waiting list for a liver transplant. His situation was quite serious and life threatening.  But, on the outside, he looked fine.  Some symptoms common to PSC include abdominal pain, itching, and fatigue—which are not particularly visible to others.

Confusing things even further, many chronic illnesses have periods of health or remission and times when the conditions flare up.  They can also be episodic in nature—like with migraines.  Migraine episodes can be extremely debilitating, and in some people, the symptoms can go beyond a severe headache, include nausea, vertigo, loss of hearing, and loss of speech.  But between episodes, the person recovers completely.

It is very important that teachers understand how serious and real the symptoms of a chronic illnesses can be even when they are not visible.  When a teacher tells a student he doesn’t “look” sick, it can sound to the student as though his teacher doesn’t believe him. The skepticism is hurtful, and can also lead to withholding the help a child needs in school.

2. A Specific Illness is the Same in all People

Nearly everyone diagnosed with a chronic illness has been told something similar to this: “Oh, you have [insert illness]?”  My friend’s son has the same thing.  He just takes some medicine and is doing very well. It’s not that big a deal for him.” The punch line is usually left unsaid, out of politeness: “why are you making such a big deal, then?” The assumption that all people suffering from the same illness have the same symptoms, outcomes, and responses to treatment, is absolutely not true. The same disease can vary widely from person to person.  What might be a minor problem in one person may mean several surgeries, hospitalizations, or chronic pain in another.

The intention of comments comparing two individuals suffering from the same illness, are at times meant to reassure people that they will be fine.  At other times, it is more accusatory, insinuating that they are exaggerating their medical problems to gain sympathy or to benefit from accommodations they don’t need.  Whatever the intention, telling someone that their illness isn’t a big deal can come across as dismissive and patronizing. A friend of mine has a daughter with cancer who is taking chemotherapy treatments.  She gets serious side effects from the treatment often requiring her to be hospitalized.  My friend spoke to her daughter’s teacher about her condition.  The teacher responded that she knew another child with the same form of cancer, who was never absent due to treatments.  The teacher expressed her skepticism to my friend, insinuating that her daughter was exaggerating her symptoms to get attention and to be excused from doing her work.

3.  It’s Your Fault that You are Sick

It is common for others to blame people with chronic illnesses for being sick.  The assumption is that they must be doing something wrong—too much stress, a bad diet, not enough sleep, not enough exercise, etc.  First, let me be clear that scorning someone for being sick, regardless of the influence of lifestyle on their illness, is absolutely wrong and discriminatory.  Additionally, chronic illnesses are complex, and can be affected by several variables, including genetics and environmental factors, which are not yet fully understood by the medical community.  Lifestyle choices are but one variable, affecting some illnesses more greatly than others. Of course, taking good care of ourselves is likely to produce the best outcomes possible.  But we also all know people who take particularly good care of themselves, and developed serious diseases.  Others have less than perfect lifestyles, and never develop a chronic illness. There is still a lot we do not understand about chronic illness and why they develop in some people and not in others.

One example comes to mind that I think illustrates the point about how little we understand about so many chronic illness, and how unfair and hurtful it is to blame people for their illnesses, even if we think we understand their causes. Until the 1990’s, people suffering from stomach ulcers were told that they had created the ulcers from having too much stress and lousy diets.  They were told to stop drinking coffee, and meditate. For sure, these lifestyle changes were likely to relieve symptoms somewhat, but it was discovered in 1982 that the culprit of the majority of stomach ulcers is the h. pylori bacteria.  According to the National Institute of Health, taking antibiotics has become the cure for more than 90 percent of stomach ulcers.

Regardless of the influence of lifestyle on chronic illnesses, it is absolutely wrong to discriminate against people who are sick. You can’t deny a student the support he needs to get an education, because you think he should eat a better diet.  Our society is best when it protects its entire population and gives everyone equal opportunities.

4.  Accommodations Keep Kids from Learning how to Deal with Challenges

This is the tough love argument. It tells kids who are sick that the world is filled with discrimination so they better just get used to it, because no one is going to help them when they get out of school.  The school principal and guidance counselor gave me this argument when my older son, Aaron, was in middle school.  They told me Aaron should learn to live with some challenges and not seek accommodations in school. At the time, I thought this view was an anomaly, from a particularly ignorant pair…until I spoke with other parents whose children were in different schools, and discovered it was more widespread.

I would argue that students with chronic illnesses are already coping with a lot more than their peers, and many develop a level of strength and maturity unknown to kids who have not suffered in some way.  The school does not have to pile on more barriers to teach them a lesson on coping with life. When students have chronic illness, they often have to work harder to keep up with their classes, while coping with physical pain and the uncertainty of whether they will be well the following day.  They need to cope with going to school with uncomfortable and perhaps embarrassing symptoms, all the time trying to lead as normal a life as possible, and trying to think positively.

The accommodations mandated in federal laws protecting students with chronic illnesses against discrimination (Section 504 of the Rehabilitation Act and the American’s with Disabilities Act), are intended to provide an even playing field for students.  They are not getting accommodations that give them an advantage over other students.

There are legitimate worries that protections in the workplace are weak for people with chronic illnesses, so students are likely to face some additional challenges when they enter the workforce.  But, hopefully, they will be given the support and accommodations they needed in school, so they will be armed with a good education and skills.  Additionally, I’d argue that the solution to the disparity between anti-discrimination protections in schools compared with the adult workplace is to improve anti-discriminations laws in the workplace, rather than rolling back the laws that exist in schools.

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Where the States Stand on Medicaid Expansion

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Where the States Stand
Thanks to the  The Advisory Board Company for creating this map! – Rachel


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Health Care Reform Trivia Part II: The Health Care Gap in the United States

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Amount of GDP spent on healthcare in the U.S. in 2012: 17.6 cents for every $1


U.S. population in 2012: nearly 313 million
Number of people on Medicaid in 2012: 72.6 million (23.2 percent)
Number of people without health insurance in 2012: 48 million (15.3 percent)


Number of people who lost employee-sponsored health care from 2007-2009:  5 million
Percentage of Americans with employee-sponsored health care in 2009: 59 percent


Average percentage higher insurance rates paid by small businesses versus larger businesses: 18 percent


Percent of all people who did not receive or delayed needed medical care due to cost in 2011: 10.3%
Percent of uninsured people who delayed care due to cost in 2011: 33.3%


Health care gap for people with chronic illnesses and pre-existing conditions

Estimated ratio of Americans with a pre-existing condition: 1/2


Number of people with pre-existing conditions who are uninsured: up to 25 million 
Estimated number of children with pre-existing conditions who are uninsured: 2 million


Estimated percentage of uninsured with chronic illnesses who delayed care or did not fill prescriptions in 2009: 60 percent


Sample of pre-existing conditions triggering higher rates or denial of coverage by insurance companies before health care reform:

  • Arthritis
  • asthma
  • high cholesterol
  • hypertension
  • obesity
  • depression
  • anxiety disorders


Kaiser Foundation
Huffington Post
Health system Measurement Project
CNS News
U.S. Dept. of Health and Human Services

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Imagine if Education were provided like Health Care in America (Throw out the Universal Education System and bring in the Education Companies!)

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Our education system in the U.S. isn’t perfect—it’s got its problems. And yet it is an impressive achievement that we are able to provide a free education to every child. While a few people may grumble about paying taxes, we all share the cost of education, and we’ve gotten used to the idea that every child has a right to go to school. Our economy, living standard, and quality of life are more prosperous because of universal education.

It’s unfortunate we didn’t see the wisdom of providing universal health care in the U.S. as well. Instead, we’ve accepted a system that leaves millions of people without health care, bankrupts families that cannot pay their enormous hospital bills, and denies care to the sickest people. While ObamaCare is bringing welcome reforms, we’re still stuck with health insurance companies acting as expensive, unnecessary middlemen.

How did we come up with such a ridiculous way of providing health care in America? Why are we able to provide a universal education in our country but shy away from a universal health care system? Imagine if we had a similar lapse of judgment when we set up our education system in the United States. Here’s what it might have looked like. – Rachel

About “Education Assurance” and “Educaid”

In the United States the government pays the educational expenses for only the poorest families. The rest of Americans have to pay to educate their kids. But most families do not pay teachers and schools directly. Rather, they pay a middleman. Families purchase what are called “education assurance policies” sold and managed by “education assurance companies.”

The assurance companies issue students a card with a policy identification number. Students go to teachers to get educated and then teachers submit their bills to the education assurance companies, who then pay the teachers. Most schools have billing departments, since the payment process can be a complicated mess of paperwork. Sometimes, there is disagreement as to whether the education service provided was actually needed, and the education companies refuse to pay the teachers.

Education assurance is quite expensive, and most American families cannot afford to pay the premiums on their own. About 60 percent of families work for employers who offer “education benefits”—in such cases, employers split the cost of education assurance with their employees.

Education of the very poorest kids is provided by the government (and funded by taxes) through a program called “Educaid.” Educaid does help children get access to education, but there are some problems. Educaid usually pays teachers less than education assurance companies, so more and more teachers are refusing to teach children on Educaid. As a result, some kids must travel long distances to find schools willing to teach them.

Still, Educaid is better than having no education at all. The unlucky kids whose parents do not get education benefits from their employers, but who earn too much to be on Educaid, fall through the cracks. In such cases, parents often pay out-of-pocket for a couple hours of instruction for their kids when they can afford it. Some families go bankrupt trying to cover school expenses. Other kids get no education at all.

The Fight over Education Reform

For decades, Americans have realized that the education system is broken. It is too expensive, and there are too many kids who cannot afford even a basic education. Over the years, the American people have proposed various education reforms—most of which have failed to pass. Some groups have proposed getting rid of education assurance companies and replacing it with a universal public education system managed by the government and paid for by taxes–making education free and accessible to all children. The reforms have failed because: 1) education assurance companies have a strong political lobby; and 2) lots of people would lose their jobs if we got rid of education assurance companies. About 500,000 people work in the education assurance industry. Add to these all the people employed in school billing offices and you see significant job losses.

Republicans opposed to education reform are also concerned that universal education would make rich people pay too much in taxes resulting in job loss for millions of middle class Americans. Democrats dispute that raising taxes on the rich to pay for universal education would result in job losses—particularly since businesses would no longer have the burden of providing expensive education benefits to their employees.

The Affordable Education Act of 2010 or “ObamEd”

Despite the opposition to education reform, Barack Obama and the Democrats in the House and Senate managed to push through the most significant education reform since Educaid was created in 1965–The Affordable Education Act of 2010, informally known as “ObamEd.”

The Affordable Education Act (AEA) will bring several important benefits: more Americans will get an education; students with special needs will no longer be denied education assurance; and assurance companies will no longer charge higher premiums for students with cognitive or physical disabilities. The cost of education assurance premiums should go down with a new education mandate (see below) and with pure capitalist competition in the education assurance marketplaces (also see below).

However, ObamEd has been a really tough sell, mostly because of misinformation and propaganda spread by groups and politicians trying to derail the AEA. For instance, Americans were incorrectly told that ObamEd would include “education denial panels,” where the government would decide which kids were worth educating. In reality, ObamEd does not institute a system of “denial panels.” Arguably, it gets rid of the “denial panel” created by the education assurance companies. Propaganda groups also warn that ObamaCare is a socialist plan which will, by its very socialist nature, bring down our economy and take away all our liberties.

Education Assurance Exchanges and Educaid Expansion

President Obama and his fellow Democrats insist that ObamEd is rooted in capitalism–so no worries that we are becoming socialists or communists. In fact, one of ObamEd’s core reforms is the creation of “education assurance exchanges”—a purely capitalist marketplace where families and small business can buy education assurance.

The exchanges will be online marketplaces—similar in structure to Orbitz or Travelocity. There will be several education assurance plans available in the exchanges: a bronze, silver, gold, and platinum plan. The plans differ in the costs of their premiums and copays. For example, in the cheapest plan, which is bronze, assurance premiums are lowest but families pay 40% copays to teachers. In the platinum plans, monthly premiums are highest, but families only pay 10% copays.

The AEA will provide help to low- and middle-income families. Educaid will be expanded in most states to cover families bringing in 138% or less of the federal poverty line (FPL). And Families earning between 138% and 400% ($92,400 for a family of 4) of the FPL can get an education tax credit to help them afford assurance in the education assurance exchanges.

Education Assurance Mandates

Perhaps the most controversial aspect of the AEA is the mandate for all Americans to buy education assurance. If families refuse to buy education assurance, they will have to pay tax penalties (and still not get an education for their kids).

Advocates of the AEA say that mandates will make education assurance more affordable for everyone because it will increase the number of people paying into the system, and provide education for more kids. But, even many liberals are uncomfortable with the mandates. It hardly seems fair or progressive for the government to abandon kids who have modest incomes, and then slap their parents with an ultimatum: buy education assurance you cannot afford, or pay a penalty you cannot afford.

Education Assurance and ObamEd are Ridiculous, Inefficient, and Unfair


Thank goodness this was all just fiction. My own kids attend New York City public schools. In reality, the United States provides a universal public education through a single-payer system—meaning it’s paid for by the government with money collected through taxes. While it’s not perfect, it sure beats an “Education Assurance system” and an “ObamEd” fix.

But wait! Health insurance and ObamaCare are real! Why are we putting up with it?

Why not go for a Single-Payer, Universal Health Care System instead?


The United States is the only developed country that does not have a universal, nationalized health care system–and we suffer as a result. Americans pay an average of 2 ½ times more on health care than other developed countries, yet our health isn’t so great. The U.S. has the lowest life expectancy and highest infant mortality rate among developed countries. We also have fewer doctors per person than most developed countries.

Have you ever asked a European or Canadian what they think about their national health care systems? I have, and have gotten fairly favorable responses—with a few minor grumblings. Do you know that in Britain’s National Health Service (NHS), doctors make house calls—for free!

Britain’s NHS has also accomplished the miracle of keeping Stephen Hawking alive despite his struggle with Lou Gehrig’s disease—and without bankrupting him! In response to a statement in the American press claiming that the NHS in Britain would have killed him (not realizing that Hawking is a British citizen who gets his medical treatment in England), Stephen Hawking said, “I have received excellent medical attention in Britain, and I felt it was important to set the record straight. I believe in universal health care. And I am not afraid to say so (NYT, May 9, 2011).” I also believe in universal health care, and wish we had it here in the U.S. too. — Rachel

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Will Health Care Reform help Small Businesses and Nonprofits Afford Health Care Benefits?

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The Affordable Care Act (ACA), ObamaCare, Heath Care Reform—whatever you call it, it’s the same thing and it is the biggest reform in U.S. health care since Medicaid and Medicare were signed in to law in 1965.  We’ve already seen many changes since the ACA began in 2010–now children cannot be denied coverage due to pre-existing conditions, kids can stay on their parents insurance until age 26 and insurance companies can’t drop your coverage if you get sick. 

The ACA’s most significant reforms will be coming online in 2014—reforms intended to make health care benefits more accessible to individuals, families and small businesses.  In the coming year, individuals and small businesses will be able to buy insurance through health insurance marketplaces (also called exchanges), and health insurance will be a mandate for most people.

Businesses with fewer than 50 employees are not required to buy health insurance for their employees under the Affordable Care Act (ACA).  However, the ACA could make the costs of health care affordable to more businesses through tax credits and expected reductions in health care premiums—all starting on January 1, 2014.

Although the ACA should help more businesses afford health benefits, some businesses have such modest incomes that tax credits and reduced premiums will still not lower insurance rates enough for them to cover their employees.  With a few exceptions, workers who do not have health benefits through their employers will have to buy their own insurance or pay a tax penalty starting in 2014.

If you want to provide Health Benefits for your Employees…

The ACA intends to make health coverage more affordable by creating state marketplaces where individuals and small businesses can buy insurance.  The insurance premiums are expected to be less expensive since the companies compete openly and their plans and prices will be regulated by the federal government.

Applications to buy insurance through these marketplaces will be available starting Oct. 1, 2013 with insurance policies starting on Jan. 1, 2014.

Some small businesses and nonprofits will be eligible for tax credits. Starting In 2014, tax credits will cover up to 50 percent of premiums (35 percent for nonprofits).  You can use a small business tax credit calculator to determine if your business qualifies for a tax credit.

Cost of Health Insurance in the Marketplaces

Until the state marketplaces come online on October 1, 2013, most of us will not know the exact prices for insurance policies and the prices will vary by geographic location.

All states will offer a choice of plans that will vary in price but offer the same quality of care and the same access to doctors and medical services.  There will be a bronze, silver, gold, and platinum plan.  The bronze plan will have the lowest premiums and the highest co-pays (40% copay).  The platinum plan will have the highest annual premiums and the lowest co-pays (10% copay).  The silver and gold plans will have premiums and copays between these two.

The ACA will limit the deductibles and the out-of-pocket costs for individuals and families.  The Act limits out-of-pocket medical costs to $5,950 for individuals and $11,900 for families—not including insurance premiums.  Families and individuals receiving subsidies would have even lower maximum out-of-pocket costs.  

If you don’t provide Health Insurance for your Employees…

Even though businesses with fewer than 50 employees would not pay a penalty, your employees who do not have health insurance through another means will likely have to buy insurance on their own or pay a tax penalty starting on January 1, 2014.

If Employees Want to Buy Health Insurance on their Own…

They may be able to get more affordable individual insurance through their state marketplaces (also called exchanges).

Depending on their incomes, some people will qualify for a tax credit to help them buy insurance in their state marketplaces.  People making less than 400 percent of the federal poverty level ($45,960 for an individual and $94,200 for a family of four in 2013) are eligible for a tax credit on a sliding scale.  Price regulations and more transparent competition is supposed to lower prices for health insurance, so even workers who do not qualify for subsidies should find health care more affordable.

Undocumented immigrants cannot buy health insurance in the marketplace,  and would therefore only have access to health insurance sold outside of the marketplaces.

Employees earning lower incomes may qualify for Medicaid which will be expanding to cover more people starting in January 2014. Individuals and families making less than 133% of the FPL could be eligible for Medicaid (in 2013, that’s less than $15,282 for an individual and $31,322 for a family of 4).  However, Medicaid coverage will continue to vary among states as some have rejected the federal Medicaid expansion and will not be participating, while other states are going beyond the federal minimum and are expanding to cover even more people.  With a few exceptions, immigrants have to have legal status in the US for more than 5 years to qualify for Medicaid.

 If Employees do not have their Own Insurance…

They may have to pay a tax penalty. The tax penalty for individuals who do not have health insurance will start at $95 per person in 2014 and increase each year.  The penalty amount increases to $325 in 2015 and to $695 (or up to 2.5% of income) in 2016.  After 2016, the penalty will increase with inflation.  Families will pay half the penalty for children, up to a cap of $2,250 per family.

There are a few circumstances in which individuals would be exempt from the health insurance mandate and exempt from penalties:

  • When the lowest-cost plan available in the region in which they live exceeds 8 percent of their incomes;
  • Those with incomes below the tax filing threshold;
  • Native Americans;
  • Those who haven’t had coverage for up to 90 days;
  • Undocumented immigrants; or
  • Imprisoned people.


I am generally a proponent of the Affordable Care Act, because it brings some welcome improvements.  It is certainly better than what we’ve had in this country before the reform act was passed.  The ACA has already helped millions of Americans afford health care, and it will help millions more once the insurance marketplaces come online in 2014.

And yet, an arguably more practical and less painful alternative to the ACA would have been a universal, single-payer system.  In a single-payer system, businesses are relieved from the burden of providing health care to their employees, and everyone gets health care paid for through income taxes–much like the way we currently offer free schooling to all children living in the United States.  In a single-payer system, no one is left without health care because they cannot afford it—an achievement the ACA cannot claim.  In fact, the ACA is extremely unfair to the group of modest income people who will have to squeeze health insurance premiums into their tight budgets or pay tax penalties and continue to live without health care coverage.

Yes, income taxes would be higher in a single-payer health care system, but people wouldn’t have to pay those enormous health insurance premiums or copays either.  Since income taxes are progressive, the burden of health care would be more fairly distributed according to what people could afford.  And imagine all the money businesses would save if they didn’t have to pay enormously expensive health care benefits for their employees.


National Council of Nonprofits
Tax credit calculator
National Immigration Law Center
Summary of the Patient Protection and Affordable Care Act
New York State Health Exchanges
(note: every state will have its own exchange/marketplace, and many already have websites set up)

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Health Care Reform Trivia Part I: U.S. Health Care Compared to the Rest of the World

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Hi Readers – I’ve been doing some research for an upcoming post about the impact of the Affordable Care Act on people with chronic illnesses. Along the way, I’ve come across bits of information I found interesting that I thought I’d share. Here’s part I in a series of health care trivia…stay tuned for Parts II and III – Rachel


Average life expectancy in the U.S. in 2010: 78.2
In 34 OECD* countries: 79.5


US rank among OECD countries in life expectancy: 27th**
Rank among developed OECD countries: last


US rank in the world on infant mortality: 30th


Amount the US spent per capita on health care in the U.S. in 2012: $8,233
The number of times this cost exceeds what most developed countries spend: 2 ½ times


For every $1.00 Americans pay for common prescriptions, the Brits pay $.51 and the French pay $.44


Average cost of MRI in the U.S in 2011: $1,080
In Germany: $599
In France: $281


Average cost of a hospital stay in the US: $18,000
In Canada, Japan, and the Netherlands: $12,000- $14,000
In OECD nations as a whole: $6,200


Average cost of an appendectomy in the US in 2007:  $8,000
In Sweden:  $5,000
In Germany:  $3,000


Number of physicians per 1,000 people in US: 2.4
In the OECD: 3.1
Rank of US in number of physicians per capita: 26 out of 34


What the US does well:
US rank of Breast Cancer survival after 5 years compared with OECD countries: 1
Rank of Colorectal Cancer survival after 5 years: 2 (after Japan)
U.S. rank in shortest time for new drugs to hit the market: 1 (1.3 years)
US rank in number of clinical trials worldwide: 1 (119,469 clinical trials)

* OECD (Organization for Economic Cooperation and Development) consists of developed countries and a few countries with emerging economies including Chile, Mexico, and Turkey.

** Countries with lower life expectancy than the US: Czech Republic, Poland, Estonia, Slovak Republic, Hungary, Mexico, and Turkey


Center for Disease Control
The Commonwealth Fund
The Organization for Economic Cooperation and Development (OECD)

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