” If  you are reading this than you are blissfully unaware of what is behind you (or rather in front of us).” ~unknown

As we approach the end of October and many are beginning to get excited about Halloween, I begin to ponder on all the scary and crazy things we have gone through this year. This year seems like nature brought about the biggest scares with hurricane after hurricane and wild fire after wild fire leaving many homeless, destitute and without medical care to boot.

Many of us may still be reeling from the personal losses we might have endured this year while having to contemplate our mental and physical well being with great trepidation as we go into a new medicare enrollment period (since most of us with chronic illnesses are under this program).

I fear for the future of  the community of chronically ill and disabled individuals (e.g. Parkinson’s patients) as it seems no one is really looking out for them. All year there have been many attempts to alter the present health care laws. Although,  supposedly these were meant to improve current policies in reality all proposal have fallen short of  their intended goal -helping the sick and poor. Fortunately, most have been rejected but no real progress has been made in this arena.

Now, the new passing of bill failing to revive subsides for poor may bring a whole host of new issues especially for states with a large number of indigent and people on medicaid as is the state of Texas. some experts are now claiming that “President Trump’s decision to cancel key ObamaCare payments could be backfiring” by bringing into effect the laws of supply and demand forcing patients to shop around for better deals.

However, this reasoning is fret with dangers since we are talking about an elderly, sick, and in many cases poorly educated population who have neither the time, the skills, or the savvy-ness to know that there may be better plans out there. While for those of us like me who are able to and know about these options it is still a huge ordeal that requires countless man hours to determine what is the best plan considering all the medical issues and number of medications I take.  Plus, when you change plans, there is always a risk that a doctor whom you are well established with will not take that particular insurance. As it has happened to me and many others when changing insurance due to enormous premiums i am now forced to see my specialists out of network costing me even higher out of pocket expenses. One does not always have this liberty one due to increase expense for seeing out of network specialist and two  there may not even be a specialist in your area covered by your plan. This is one of the biggest reasons teleneurology for Parkinson’s needs to be allowed to be covered across state lines.

Also, even if a person with much labor could get a better deal in insurance premiums, there is no guarantee that the medications one needs to function will be covered. As we get sicker and more disabled we are less able to cope with all these changes and regulations making it harder for chronically ill to stay insured and receive adequate benefits. My insurance has already informed me that my premiums were tripling for next year- which means need to find new insurance but it is with heavy heart I have to undertake this because i finally got insurance after 8 months to cover the medications that I need. so i am not looking forward to having to battle this issue again. because it is easier to stay with current plan when you have so many things going on like trying to survive a chronic illness, i see these new changes in the law as causing bigger problems to the infirm.

Getting rid of medicare part D would greatly improve things in my opinion. Ever since this was introduced i saw a huge increase in my patients having exacerbation of their once stable illnesses as well as increased hospitalization due to the fact that many like me who take a lot of expensive medications reach the gap within first 2-3 months of the year leaving them with a choice between medicine or paying other essential bills. in the past prior to this law, most doctors including myself were able to help out patients by providing samples or finding resources to meet the needs. But, once part D came into effect these options were taken away.

So in effect the uncertainty of my illness for upcoming year along with all the healthcare changes coming our way are more frightening and terrifying than most things I can imagine especially since like many others I am part of the  sandwich generation. I not only have to worry about my own decaying health but have to take care of several infirm elderly parents and raise a child.

Thus, I urge everyone to contact their state representatives regarding need for teleneurology and improvement in access to health care and ability to maintain our own physicians and right to have the medicines prescribed by our healthcare professionals.

In conclusion, this Halloween let’s ‘use our imagination not to scare ourselves to death’ but to inspire us to pursue those things which are worthy of our time and resources for a better, healthier life with PD (and any other chronic illness).

Happy Halloween everyone!  Eat drink and be spooktacular!

Sources:

Sullivan, Peter. (Oct 27 2017) Trump Obamacare may bolster law

Judge rejects bid by 18 US states to revive ACA subsidies Reuters health Info Oct 25 2017

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all rightsd reserved by Maria De Leon