A powerful voice…

https---blueprint-api-production.s3.amazonaws.com-uploads-card-image-480700-d11923cf-d435-4043-8280-f6c6cccc589bA few days ago, the world was sad to learn that Chris Cornell passed away.  My mother was not familiar with Chris and asked me who he was.  While telling her, I kept saying he had a “powerful voice”.  I remember seeing him with Soundgarden in 1992.  I knew some of their music, but when I heard him sing…..WOW!  His voice made an impact whether you were a fan or not.  Over the years, Cornell’s music has been a consistent part of my life. Chris had a gift and he used it well.  The more I heard the term “powerful voice” mentioned on the news, the more I began to think about all of the patients I know who also have a powerful voices.

A powerful voice is obviously not just one that can sing.  It’s a person who can tell their story to inspire, change, impact others, and provide validation of feelings.  There are many patient advocates who have provided these things to me with their voice.  Britt from The Hurt Blogger, Kirsten from Not Standing Still Disease, Rick from RADiabetes, Marla from Luck Fupas, Tiffany from IFAA’s Systemically Connected, and my Southern sister Amanda from All Flared Up have all helped me over the years by sharing stories that provided me with inspiration and a sense of not being alone in this chronically ill battle. My fellow patients, with their powerful voices, inspired me to join movements, pursue dreams, and fight for patients rights.  They are the reason I became a patient advocate.  They inspired me to tell my story and to strive for changing the role of patients in the world of medicine.

Another powerful voice in my life is Sean, a 17 year-old who has been living with Ankylosing Spondylitis for several years.  He decided four years ago that he wanted to do something for others living with juvenile arthritis and he began “Sean’s Squad”.  Each year, Sean has inspired friends and family to walk with him to raise money and awareness for the Arthritis Foundation Eastern Pennsylvania‘s Walk to Cure Arthritis.   This year the AF made him their “Young Adult Honoree”at the annual walk in Philadelphia. It was a well deserved honor for an amazing kid who found his powerful voice at a young age and is making a positive difference in both his and the lives of others living with juvenile arthritis.  DSC05138

I went to both high school and college with Sean’s mom and dad, so I have known him his entire life.   Every day, Sean inspires me with his wit, charm, and dedication to living well with AS.  He is an amazing young man that I am honored to know and love.

Blogging has been a way for me to deal with my feelings of living a chronic life.  Then I started to notice that patients were interested in hearing my stories.  Now, I’m not brave enough to say I have a powerful voice like those I mentioned earlier, but I do hope that my voice/ stories do connect with other patients and make them feel they are not alone on this chronic journey.  The patient voice is powerful and the medical community needs to see us more as team members in our treatment instead of passive recipients of drugs and treatments.  We are patients, hear us roar.

I preexist therefore I am…


brain-freeze_o_1928899I’ve been in a brain freeze for the past few days.  The recent passing of the AHCA bill in Congress has left me reeling for many reasons.  When I expressed concerns, a friend asked why I was worried because I don’t use Obamacare 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 I’m depth unless you need it. Insurance is a pool 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.  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 allows insurance companies (and yes, that means private insurance, too!!!) to cap people’s insurance.  What does this mean?  Well, say I have a $1,000,000 coverage limit for my lifetime (there are also yearly caps).  Once I meet that limit, I would lose my insurance.  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.  That million dollar coverage limit will be surpassed in less than 5 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.  Insurance companies also are not big on reinventing the wheel.  Historically, they take on mandates set by the government and follow the lead of CMS.  If government mandated insurance sets up these limits, private insurance is sure to follow.  Do you see the validity of my concern now?

As for high risk pools, well that would possibly cause my out of pocket costs to rise significantly.  I’ve seen many figures that are outlandish.  I would see about a $26,000 rise according to one chart and $35,000 according to another.  None of these figures are exact because the AHCA bill passed without a cost figure.  No one knows.  I live with thyroid disease, DSAP (skin disease), fibromyalgia, spondlyoarthropathy, and high blood pressure.  I am not being a drama queen when I say that I am petrified.  I also think about how many people across this country have preexisting conditions.  Obamacare-Pre-existing-ConditionsThe threat of higher deductibles and  higher prices for coverage causes me to have higher anxiety all the way around.  I can’t imagine how parents of children with preexisting conditions are feeling right now.

The scariest thing for me is not just the ramifications of this bill passing through Congress, but  that people in my government and country feel that it is okay to cause millions of American’s 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 know that 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 many never use, but when you get sick, it’s there.  18425028_10154698294562309_8112402611752696432_nPeople 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 thousands of people in the U.S. die each year because they don’t have health care.  How can any rational person think otherwise?

In addition to penalizing sick people, there will also be an age tax.  It will charge those not yet eligible for Medicare a penalty of five times what others must pay for health insurance.  This is all related to letting insurance lapse in coverage over 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 your health care is 5% higher if you are over 60?  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.

At the root of it all are drug and insurance companies that make millions of dollars off of the illness of others.  pills-and-money-greedRecently 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.

Whatever side of the aisle you land on, it’s time to take a stand.  We have representatives in Washington DC who receive money from big industry leaders that influence their decisions.  Voters like to think that their elected officials actually represent them.  Not always the case when it comes to the world of politics (shocker, right!!!???….probably not).  They will say they are “for helping to lower healthcare costs for Americans” yet don’t regulate the industry that drives the prices higher and higher.  Instead they tax Americans and provide tax breaks to big pharma and insurance corporations. How does that make sense in lowering costs for Americans?  Costs of drugs in the United States are so much higher than other countries.  Drug companies justify this cost by proposing that the high cost of the drug than reduce the chances for hospitalization in the future (which carries a significantly higher cost).  I guess in some ways it is a valid point; however, if people had reliable coverage that promoted proactive approaches to instead of reactive approaches to healthcare, wouldn’t that help to balance the impact of adverse selection?  I know the ACA tried to do this with wellness coverage, but the industry was not prepared for how many people in this country were really sick.


It’s time to make the healthcare industry and Washington DC to catch up to the needs of Americans with and without preexisting conditions.  It’s time that patients across the country let their voice be heard.  man-megaphoneCall, 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 health care, it’s time to speak up!  When the President said, “Who knew healthcare was so complicated.”  I responded, “I did!” Being silent is no longer an option.  I preexist therefore I am ready to fight for affordable healthcare!