Time to fight….

This is an updated version of my post regarding insurance “I preexist therefore I am…” and a longer version of my “The Mighty” piece : How AHCA, Repeal of ACA Could Affect Me With Preexisting Conditions.  I am reeling over the Senate vote to repeal or replace ObamaCare today.  I firmly believe the law needed improvement, but taking it away will be so very detrimental to many.  These are my thoughts.

I’ve been in a brain freeze for a while now. The recent passing of the AHCA (American Health Care Act) in the House and the Senate’s Better Care Reconciliation Act of 2017 (BCRA) have left me reeling for many reasons.  Just today, Senate Republicans passed the vote to advance to floor debate on their efforts to repeal and replace Obamacare. Vice President Pence had to cast the tie breaking vote. Senator John McCain proposed that Republicans and Democrats come together to make a good law that will solve the problem of many Americans regarding healthcare.  I, like most Americans, are doubtful that will happen and we will once again, have a bill that is one-sided and hated by millions.


When I expressed concerns regarding healthcare changing, a friend asked why I was worried because I don’t use Obamacare (also known as the Affordable Care Act or ACA) as my insurance. It made me realize that people have no idea what insurance is and how it works. We all think we know how it works, but honestly, the hows and whys are never really looked at in depth unless you need it.


I unfortunately need to use my insurance a lot. I will be one of the people placed into the high-risk pools according to the AHCA. The BCRA (in the version released on June 22, 2017) amended this by stating that states cannot pass laws allowing health insurance companies to deny coverage to applicants, including those with preexisting health issues; however, it allows states to offer scaled down insurance plans. This means that insurers are not required to offer “essential health benefits” (EHB) which were put in place by ACA.  There are 10 EHBs:


  1. Ambulatory patient services (outpatient care you get without being admitted to a hospital)
  2. Emergency services
  3. Hospitalization (like surgery and overnight stays)
  4. Pregnancy, maternity and newborn care (both before and after birth)
  5. Mental healthand substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)
  6. Prescription drugs
  7. Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills)
  8. Laboratory services
  9. Preventive and wellness services, including counseling, screenings and vaccines to keep you healthy, and chronic disease management
  10. Pediatric services, including oral and vision care (but adult dental and vision coverage aren’t essential health benefits)

With these benefits eliminated, an insurance company could impose annual caps or a lifetime coverage cap for people who need or want those benefits. Again, I do not currently use the ACA, but the ACA did impact my personal insurance by not allowing a cap on coverage. The AHCA and BCRA allow insurance companies (and yes, that means private insurance, too!) to cap people’s insurance.


What does capping insurance mean? Well, say I have a $1,000,000 coverage limit for my lifetime (there could also be yearly caps). Once I meet that limit, I would lose my insurance and have to pay out-of-pocket for everything from that point on. Now, some people wouldn’t worry about reaching that limit, but my current drug is $18,000 per month (in addition to all of my other medication). That drug alone costs my insurance $216,000 a year. I will surpass that million-dollar coverage limit in less than five years with a lifetime cap. I firmly believe this drug is the only reason I am still able to walk and use my hands functionally. I need it to live. I need it to work.


As for high-risk pools, it seems the BCRA will not include those, but they will allow states to offer these pared down insurance plans that do not cover essential health benefits. What does that mean? Well, it means that people who want or need to have those EHBs in their insurance will have to pay more for more coverage. Essentially, people with pre-existing conditions will have out-of-pocket costs rise significantly. How much? No one knows exactly.


I live with and manage thyroid disease, DSAP (skin disease), fibromyalgia, spondyloarthropathy and high blood pressure. I am not being a drama queen when I say I am petrified. The amount of coverage I require just to function may be more than I can actually afford. Let’s also not forget that no one can predict that they will remain healthy or free from accident/injury throughout their lifetime. Someone may opt for an insurance plan without EHBs and then years later require rehabilitative medicine following a car accident or stroke. How will they afford for expensive therapies if their insurance doesn’t cover it?  Their cost for insurance will be low, but when it doesn’t cover what you need?  Is the low cost worth it?  Someone I loved dearly had bare bones healthcare pre ACA. I remember how thrilled he finally got a job that provided insurance.  He ended up battling cancer. His insurance being minimal covered the bare bones of treatment. Fundraisers helped him make end meet.  The financial stress of cancer combined with the cancer itself, was simply too much. If he had better healthcare, I firmly believe he would have had a better chance to survive.


I also think about how many people across this country have preexisting conditions. The threat of higher deductibles and higher prices for coverage causes me to have higher anxiety all the way around. The scariest thing for me is not just the ramifications of this bill passing through the Senate, but that people in my government and country feel it is OK to cause millions of Americans to lose affordable insurance. To classify those with preexisting conditions as if we are simply drains on the healthcare system instead of equals to other tax-paying citizens.  I pay for my insurance so that women can have maternity coverage (even though I do not have children), I pay so people with cancer can receive chemo treatments (even though I do not have cancer), and I also expect my insurance to pay for what I need.  That is how insurance works.


I know I am lucky to have insurance. I know my costs are higher than many others in my insurance pool. Should I feel guilty? Should I be grateful and never complain? I know many of my fellow Americans don’t want to pay taxes for insurance that includes someone like me. I have no issue with doing so. I’m happy to pay extra money so my fellow citizens have the medical care they need when they need it. That is what insurance is after all. You pay for coverage you may never use, but when you get sick, it’s there.


People don’t seem to understand how important it is to have insurance coverage. Some politicians have made outlandish statements that indicate to me they have no idea what it is like to live with chronic or acute illness. For example: Rep. Raul Labrador (R-Idaho) stated in a town hall, “Nobody dies because they don’t have access to health care.” Um, what? Go ahead and re-read that sentence again. I don’t have statistics on it, but I’m willing to bet that many people in the U.S. die each year because they don’t have health care.


In addition to penalizing sick people, there will also be an age tax. It could raise the premiums for older adults to be five times what younger adults are charged. This is all related to insurers being able to charge you more and exclude coverage for preexisting conditions (for up to 18 months) if you have a lapse in health care coverage for more than 63 days. So imagine, you lose your job to layoffs or downsizing and can’t afford to keep up insurance while you job search. You get it back once you get a new job that may or may not pay you less than what you made before, but now you might have to pay more for health insurance? I guess being unlucky is also a preexisting condition.


Now in saying all of this, I will admit, ACA needed a lot of work, BUT it was the first move in the right direction.  I feel like politicians are so polarized by their party that they refuse to work together….and Americans with preexisting conditions are the ones paying the price.  I’ve written before in A burned down house…I don’t think so… that I am tired of people making a profit off of my illness.  Drug costs are soaring, malpractice is soaring, while patients are struggling to make ends meet.  The thing that Washington did not take into consideration is that more Americans than expected have medical issues.  The number of sick people who accessed ACA caused insurance companies to go haywire, hence they dropped out of the system.  This left patients with little choice and caused coverage prices to rise steadily.  Instead of working together, Democrats and Republicans have simply stuck to party lines.  There has been no compromise. No working together for the betterment of Americans.


pills-and-money-greedAt the root of it all are drug and insurance companies that make millions of dollars off of the illness of others.  Recently big insurance companies like Oscar and Aetna have pulled out of the ACA exchange because it was not profitable enough.  Too many Americans who signed up for ACA were sick and in desperate need of insurance to cover medical costs.  Sadly, many couldn’t maintain insurance because the costs skyrocketed.  See insurance companies love to make money.  They have deals with pharmaceutical companies.  It goes something like this:  Big pharma sets a drug price.  They negotiate with insurance companies on a price and then the offer rebates that lower the costs of those drugs to insurance companies while patients keep paying their high deductibles.  Again….the rich corporations keep getting richer while patients and their families struggle to pay high deductibles for medication that they need.  No one in Congress has been talking about that.  Heck most people have no idea about terms like rebates, adverse selection, step therapy, and moral hazard (click on links to learn more) relate to insurance.  People have no idea that doctors are going out of business due to minimal reimbursements for administering certain drugs and treatments in house.  For example, a rheumatology office can provide IV biologic drugs in their office.  To provide this service, the office must have staff on hand to monitor the infusion treatment.  This job is typically done by a nurse.  Insurance will reimburse a percentage of the drug administered in the office, but will not reimburse the cost of the nurses role in that treatment, the IVs, the materials used etc..  The office can’t provide the drug without staff and supplies, but then can’t pay for the staff  or supplies due to lack of reimbursement from insurance.  This forces doctors to close their infusion rooms and patients must get their treatments at hospitals that charge insurance way more than a small medical practice would.  I guess big business insurance prefers to do business with big business hospitals instead of small business doctor’s offices.


The President tweeted recently, “Republicans should just REPEAL failing ObamaCare now & work on a new Healthcare Plan that will start from a clean slate. Dems will join in!”  tt


Wow. The leader of our country wants the current law repealed so we can have a “clean slate.” How convenient! If only patients could get a clean slate. Make our diseases go away until we are ready to finally handle it! What a fabulous idea! I can see it now: cancer patients, autoimmune patients and differently abled patients all putting their treatments on hold until Washington D.C. politicians can figure stuff out. That sounds logical! I propose this instead: Patients under ObamaCare go about getting their treatments and not pay anything until our political leaders figure things out! How is that for a clean slate?


Whatever side of the aisle you land on, it’s time to take a stand. It’s time to make the healthcare industry and Washington D.C. catch up to the needs of Americans with and without preexisting conditions. It’s time that patients across the country let their voices be heard.


Call, text, write, email and visit with your elected officials. Resistbot is one way to turn your texts into faxes that reach officials. Common Cause helps you figure out who your elected officials are. It will take only a few minutes a day to let your voice be heard. If you want affordable healthcare, it’s time to speak up! When President Trump said, “Nobody knew that healthcare could be so complicated,” I responded, “I did!”

Being silent is no longer an option. I preexist; therefore, I am ready to fight for affordable healthcare!



How the Current Health Care Debate Affects Me as Someone With Preexisting Conditions

***This is an updated version of I preexist therefore I am… ***


I’ve been in a brain freeze for the past few days. The recent passing of the AHCA (American Health Care Act) in the House and the Senate’s Better Care Reconciliation Act of 2017 (BCRA) have left me reeling for many reasons. When I expressed concerns, a friend asked why I was worried because I don’t use Obamacare (also known as the Affordable Care Act or ACA) as my insurance. It made me realize that people have no idea what insurance is and how it works. We all think we know how it works, but honestly, the hows and whys are never really looked at in depth unless you need it.

Read more on The Mighty ….

What about us?

I’m going out on a limb.  I may be controversial with my stance, but I am taking it.  I see all the programs out to help people with opioid addiction.  I’ve also seen memes asking why Narcan (a drug that reverses opiod overdoses) is free while chemo isn’t free for cancer patients.  bj3LWVIHbJdRkEt5hGMSBLntwVMNAt0w_lgNow drug addiction is a horrible thing and it is impacting millions of people and their families. I’ve cried reading the obituaries of young people who lost their battle with addition. It’s all very tragic. I agree things need to be done to reduce these statistics.  According to the American Society of Addiction Medication (2015)

  • Of the 20.5 million Americans 12 or older that had a substance use disorder in 2015, 2million had a substance use disorder involving prescription pain relievers and 591,000 had a substance use disorder involving heroin.

20.5 million is a lot of people.

Now let us look at the statistics of people who are living in chronic pain.

  • In 2011, Congress commissioned an IOM (Institute of Medicine) report on people living in pain.  According to that report, 100 million people in the United States live with chronic pain.  Let’s look at that statistic again.  100 million people living with chronic pain.  That is way higher that the 20.5 million people living with substance abuse.

100 million people is a LOT of people.

Now I’m positive many people who live with chronic pain become substance abusers.  Pain medication is a slippery slope.  Typically, there is no good treatment for pain.  Doctors have been prescribing pain meds because it’s the quickest and easiest solution to treat pain.  I’ve taken a drug called Tramadol for 15 years.  It’s recommended that I take it 3 times a day.  Most often, I only take it twice a day.  It’s only on work days that I hit the full dose.  I hate having to take pain medication.  I know it masks my disease.  I know it makes me put more stress on my joints because the pain is dulled so I feel I can do more.  Am I addicted?  No.  My body is very used to taking this drug, so I would have to be very conscious about going off of it, but I am not an addict.  Hell, when my dog needed Tramadol and I didn’t have money, I gave her what she needed out of my prescription.

Do I know people who are addicted to pain meds?  Yes.  Many people in the chronic life/rheumatology communities have pain way more intense than mine.  They take strong drugs like morphine and oxycodone that may cause addiction.  Why do they take it?  For quality of life.  Living in pain is horrific.  It’s exhausting and life altering.  Pain medication is the only way some of us actually can function as human beings.  Are they all addicts? No.  Often there are no other treatments for people living in pain.  Little research is done for conditions like osteoarthritis.  Patients are told to take pain medication until they get down to bone-on-bone destruction of joints and they become eligible for a joint replacement.  There is no other good long-lasting treatment.  Everything is a temporary fix.

Often patients living in pain have little option for treatment.  Insurance doesn’t cover anything that may be considered experimental or high tech devices that are not considered “medically durable equipment” (like TENS units, etc).  As I have said a million or so times before, being sick is not cheap.  (I may be exaggerating with a million, but I’m probably close).  Plus, there is a stigma of living in pain. A lot of people see chronic pain sufferers as hypochondriacs, lazy, or drug abusers.  As a community, we are so misunderstood.

So my question is:  Why are 100,000,000 people living in chronic pain being treated as 2nd class citizens?   Why are politicians like Trump and Christie starting  programs to address the needs of opiod addiction, but ignoring the fact that 5x as many citizens have chronic pain due to various illnesses and injuries?  Where are the programs that help people living in serious pain get support, access to treatment, and medications that help them get off of pain medication?  Where is the funding for patients to use alternative treatments like physical and occupational therapy, acupuncture, and technology to combat their suffering?  There is no way that some out of the 100 million people in chronic pain do not become addicted to pain meds.  Why aren’t we looking at all the sources of how addiction starts?

People living in chronic pain are seen as “drain on the system” in terms of insurance, medical cost, and disability (medicaid).  We live in a reactive society where illness is often treated with bandaids because there are programs like step therapy in place that prevent more costly and possible effective treatments from being implemented at early stages of disease onset.  If you ask me, insurance companies are a big reason why opiod addiction is soaring.  Insurance will cover pain medication and reject other treatments.  It’s the easy and cheap solution when auxiliary treatments are so expensive.  ****It should be noted that there is limited treatment programs covered by insurance for mental illness, PTSD and many other conditions that lead people to self-medicate with drugs.  Insurance likes quick fixes.

So now I ask.  What about people living in chronic pain?  Where are the programs for   people living with painful, debilitating autoimmune diseases who struggle daily to get by, and now their access to their pain medication is in jeopardy?  Where is the political support for depression and suicide prevention that often coexist with chronic pain?  Where is the funding for more research to cure these diseases and to fix these injuries? What about all 100 million of us?




It’s quite an honor…


***Update.  I received a 4th nomination. Thank you again!!

A big thank you to whoever nominated me, & As my joints turn, for THREE Wego Health Awards.  I am beyond thankful and humbled.  It means so much that more than my mom an dad read my blog.  WEGO Health has lots of Health Advocates nominated for tons of awards.  Check out their site: WEGO Health Awards to learn more about some of the amazing advocates who motivate and inspire me daily.  I’m honored to be in their company.