On the upcoming New Year’s Day, as we sit amid the confetti, silly party hats and empty champagne bottles, life for many of us in the Parkinson’s community will have profoundly changed...for the good.

On that day, major parts of the Affordable Care Act (aka Obamacare, aka PPACA, aka ACA) will finally be triggered.

It won’t be an easy transition.  Nothing about the Patient Protection and Affordable Care Act has been easy. But its potential impact on those living with Parkinson’s could be greater than most of us dare to dream.

On January 1, 2014, insurance companies will no longer be able to deny coverage for experimental treatment and drugs.  The door to a true cure for Parkinson’s is about to be flung wide open.  How long we’ll have to wait till Parkinson’s no longer stiffens our joints and befuddles our minds is impossible to predict.  In the meantime, though, the new health reform act stands to make our wait considerably better.

On that day, underwriting goes away.  No longer will a Parkinsonian be denied coverage because of their diagnosis. No longer must we pay for gut-wrenchingly high priced plans such as COBRA or HIPPA to stay covered until we reach Medicare age.  No longer will younger, middle class Parkinsonians have to choose between paying for medications or their health insurance premiums.

Come January 1st, Parkinsonians will pay the same premiums for health care as everyone else.   On top of that, there will be an expansion of Medicaid (aka MediCal in California), so that those under 65 with limited income will also qualify for health care.  And, because the subsidies and tax credits are going to be very generous for at least the initial years of the exchange rollout, many of us with middle class incomes will also qualify for federal health care funding to cover the costs of premiums.

The impact of the ACA on PRO members is too vast to be detailed in one article. Therefore, this is the first of a series that PRO will be publishing on this issue.  It is NOT going to delve into the political pros and cons of the ACA.  The goal in this series is to explain the major changes and how they specifically apply to those with Parkinson’s.

For starters, for those of us on a group medical plan, the ACA does not trigger till 2015.  Group coverage in the health exchanges had been scheduled to also commence in 2014 but when the ACA became snarled in legal briefs, precious time for preparation was lost.  Now that the Supreme Court has deemed it legal, many states are scrambling to cram three years’ worth of work into less than one year of actual prep time available.  With great reluctance, it was recently decided that focus had to be on those in most need... those without individual plans.  Group plans are, therefore, given another year to be implemented.

For those individuals age 65+ and on a Medicare Part D drug plan, the Affordable Care Act will slowly reduce and eventually remove the donut hole for drug benefits.  It may also affect the current carrier you have for Medigap or Advantage plans.

Some insurance companies are pulling out of various states.  Others are moving in.  Whether this will affect you, or not, will be revealed shortly since carriers are mandated to give at least 30 days notice before exiting a state.  But each state is required to have at least one Exchange carrier.  Most already have multiple carriers that have signed up to offer their services.

If you are between 19 and 65 and don’t have credible coverage through employment, finding affordable individual coverage may finally become achievable.

“May” is the key word.  Not every state embraces this change.  Twenty-six states have been fighting the launch of the ACA.  To date, 37 bills to end it have been proposed in Congress.  All these bills have been voted down.  That has not stopped those who resist the ACA.

Some of the opposing states are refusing to create a state based health exchange to implement it.  Citizens of those states will be able to sign up for federally designed exchanges.  However, their ability to enroll will be complicated by the fact that they may not know the federal plans exist.  The ACA have repeatedly been stalled by Congress in obtaining the marketing funding it needs to educate citizens about the up-coming enrollment period between October 1, 2013 and March 31, 2014.  Opponents are hopeful that, by fighting such funding, they’ll starve ACA of the monies necessary to make its implementation a success.

Low income citizens in those states will also face further challenges, since Medicaid is scheduled to expand to cover people currently not covered.  That will be explained more in next month’s article.

Unfortunately, much of the discord and misunderstanding about Obamacare stems from the fact that health insurance is regulated on a state by state basis.  Currently, states vary significantly on what kind of health plans they allow to be sold within their borders and how large their state’s safety net extends for those at or near the poverty level.

Some states offer generous social safety nets funded by government grants.  Others believe that the answer for those in need is to seek help through non-profit charities and to cut off care to those who are not here legally.  Nationwide this patchwork of uneven responsibility for care has led to a health care system that is utterly impossible to sustain.  Hospitals and doctors have had to overcharge those with insurance to compensate for those without.  To further complicate the problem, modern medicine is keeping us alive decades longer with drugs and procedures that are both miraculous and expensive.  To address the massive drag of our aging population, health insurance premiums have skyrocketed.  Part of Health Reform is focused on reducing costs without sacrificing quality and policing the fraud that is now common place within the health industry.  All this will take time and funding to implement.

Now, comprehensive individual plans are so expensive, many have an extremely difficult choice.  Do without and pray nothing bad happens to one’s health.  Or buy insurance with such high deductibles and copays, a single major medical event would be financially catastrophic.

Sixty-two percent of people currently filing for bankruptcy do so because of unexpected health care costs not covered by health insurance.  Many of these people have individual plans that were inadequate.  Homes have been lost.  Retirement funds devastated.  Financial security has been crushed.  People have died who could have been saved.

Come January 1st, however, 51% of this country believes things will get better.  Forty-nine percent believe the ACA will be a train wreck impossible to sustain.

In next month’s edition, we’ll delve more deeply into how ACA will face its detractors and the sheer weight of its idealistic goals.  We will look at Medicaid and its part in affordable care, and we will continue to analyze how Parkinsonians will be impacted by this history making national crossroads.

Carolyn J. Shelby is a former board member of PRO who has dealt with Parkinson’s on both a personal and professional level.  The daughter and niece of Parkinsonians, she knows the symptoms and challenges from Stage 1 to Stage 5 and thereafter.  On a professional level, she has been an insurance agent and broker for eleven years, working for many of the major carriers in the country.  She currently works through Life Happens Insurance Solutions, her own independent insurance brokerage, offering her professional expertise in health insurance, Medicare and long term care planning.

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Updated: August 16, 2017