A Crazy Few Weeks

Hello all!  It’s been a crazy few weeks with lots of stuff going on behind the scenes here at Tupeak Hope. The planning stages for becoming an official non-profit have begun and networking is well under way in order to attempt to garner support and of course funding in order to make this happen sooner rather than later.

I am committed to making this dream become a reality in order to help bridge the gaps between patients and providers as well as to become a resource through which the proper services can be connected with those that need it most and may not be aware of how to find resources in their area of need.

To do this takes an incredible amount of time, energy, and yes even financial support from donors willing to aid in our mission of bridging the numerous gaps that exist for patients in trying to access services that they may need, some of which may well be life-sustaining services. Without such resources there are entire populations of people who are unable to access proper and necessary healthcare and are simply left in limbo.

At Tupeak Hope we find this to be unacceptable and unfortunately all too common an occurrence in today’s society. While people are often criticized for using the emergency department as a primary resource, it is our experience that for those without adequate access to healthcare this can easily end up being the case. The majority of people don’t do this by choice. Maybe they have no insurance through their employer, or maybe they aren’t even employed. Maybe they are employed but simply make too much for assistance in obtaining insurance, but not enough to purchase their own individual health insurance.

Here in the Northeast it is fall and there is always some sort of ‘chest crud’ that seems to go around every fall here. Let’s take a look at a simple and relatively common example of how a simple seasonal ‘bug’ can turn drastic for one without access to proper healthcare.

Let’s say you work a minimum wage job here in PA and scrimp and save every penny from paycheck to paycheck just to keep a roof over your head and pay your bills for you and your family. Your child goes back to school when school started again for the year and inevitably brings home the ‘chest crud’ that’s floating around the schools nearly every fall. Thankfully, you were able to qualify your child for healthcare through a state program, but that state program guidelines say you make too much to get coverage for yourself. You think to yourself that that’s okay because you never get sick anyhow, you’re simply worried about your kids getting the healthcare they need when they need it.

However, this year is the exception to the rule. When your child gets sick and gives said chest bug to their sibling, you treat them with over the counter remedies for a day or two until it becomes apparent that they need to be seen by the doctor. You take the day off work so that you can take them to the doctor. The doctor confirms that they indeed need multiple prescriptions, and writes for cough medicine, antibiotics, decongestants, and the like for your kids. He comments that you should be prepared because you too may get sick since it now seems everyone in your house has it.

You manage to scrape together enough money for the prescriptions for your children, and try some over the counter remedies for yourself. Eventually they feel well enough to return to school, but you continue getting sicker. Without health insurance you simply keep trudging along and do the best you can to treat the symptoms while continuing to work and care for your family. However, you begin to note you are becoming more short of breath while moving around at work, and the cough is becoming much more severe. You simply add more cough medicine because what else can you do?

Another week goes by, the kids have been over it for two or three weeks now, but you continue to get worse. Then one morning as you’re getting ready to go to work after dropping the kids off at school you notice you are having a really hard time catching your breath. You think to yourself that sure, while you’re a smoker, you’ve never had this much trouble catching your breath, so it must be the combination of the chest bug and that you smoke. You’ve tried quitting smoking, but you’re a stress smoker. Some people eat food when they get stressed. Some people bite their nails. You happen to smoke when stressed, even though you know it’s no good for you.

When you come in from work that night you are really dragging and notice you ow have a fever. You take some Tylenol and some more cough / cold medicine and go to bed hoping to feel better in the morning. You get up the next morning feeling incredibly worse yet. Suddenly you realize that whatever this is isn’t going to get better without actual medical intervention from the healthcare system, but you have no insurance. The general practitioner you’ve taken the kids to wants the entire cost for the office visit up front in cash to see you without insurance, and even if you could borrow the money you can’t get an appointment for days.

Well, you’re too weak to make it to work, and your job is notorious for firing people for calling out sick without a doctor’s note, so your only option at this point is to go the local emergency department. After sitting there most of the day waiting your turn, you finally get seen and think to yourself that luckily you should be out of there in time to pick the kids up from school. Then, just as you’re about to breathe that sigh of relief the ER doctor comes in and advises you the you must be admitted to the hospital for IV steroids, antibiotics etcetera to treat the severe pneumonia you have as oral antibiotics won’t be strong enough to manage it before it gets even worse.

Fast forward a week and a half later when you finally get well enough to be discharged from the hospital. You did everything right according to the rules at your job, but when you take in your doctor’s note from being in the hospital they advise you not to bother coming back because they already replaced you. To add insult to injury they won’t let you pick up your last paycheck because company  policy is that terminated employees will be mailed their last paycheck, which of course takes longer for you to receive it. As a result you can’t fill the oral antibiotics and other medications you were supposed to continue when you were discharged from the hospital.

I could go on and on, and on, but you get the picture. Sure there are some clinics and practices that will see patients who may not have insurance on a sliding scale or even for free if they fall below certain income guidelines, but you weren’t aware of their existence. Maybe, had you known about them, you could have potentially avoided the costly ER visit and hospital stay not too mention the pneumonia, but every entity or agency you contacted for help told you they didn’t know how to help you without insurance.

This type of thing happens all too frequently. I myself have some insurance coverage for doctor and hospital but no prescription coverage. When I got the chest bug that was going aorund I did everything right. I went to the doc immediately, got all the meds he prescribed, and still wound up in the hospital a week later for almost a full week. Sickness knows no barriers. It doesn’t recognize, nor care, if you are rich, poor, advantaged, disadvantaged, etcetera. It cares not whether you can afford the time off of work or not. It doesn’t care that if you are too ill to work you can’t pay your rent or buy groceries.

Even if you do everything right you can easily find yourself in a similar situation. Maybe it’s an injury instead of an illness. There are limitless reasons why or how you could find yourself in such a predicament, and in my opinion there needs to be better processes in place to help provide for and even protect those that need the help the most. Just because you are living paycheck to paycheck doesn’t mean your health, life, safety, and welfare are any less important than the CEO who may live across town in a nice fancy house.

After all aren’t we all human beings? When will we as a society see fit to return the humanity and compassion to all fellow human beings, not just those who may be privileged enough to have the resources that they may not need the help?

Do you  have a story to share? Is there something you see as a gap in access to healthcare you’d like to see us address? We encourage you to share your thoughts and stories below so that we can try to adequately cover as many issues as possible to help close these gaps for the largest majority of people that we can so that we may all have access to proper and necessary healthcare, preferably before it gets to the point where we are sick enough to have to be admitted to the hospital, which can have even longer and more devastating effects on both our health and financial well being.

We as patients need to learn to advocate better for ourselves, and part of that advocacy is learning to not be ashamed to share our stories so that they can be made public so that the inequities in healthcare can be addressed and hopefully fixed.

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