URGENT: Tell Senators How Repealing ACA Will Affect You

Even though most of us live in virtual caves, you still couldn't miss all the news these past two weeks about efforts to repeal the U.S. Affordable Care Act (ACA). Both the House and the Senate have already voted to begin the process of repealing it, with a target date of January 27 (you can read details at the links of each vote). And Trump's first act as President yesterday was to sign an Executive Order stating that the states do not have to comply with the ACA. Many Americans think this is a good thing because all they know of the ACA is its requirement for all citizens to have health insurance and its insurance marketplaces, which have struggled in many states.

However, there is a LOT more to the ACA than just the insurance mandate and the marketplaces. The ACA includes provisions that directly and seriously affect everyone with a chronic illness. We may soon find it difficult - if not impossible - to get affordable health insurance from any source. If you think health insurance is expensive under the current system, just wait.

You can read an easy-to-understand summary of the full Affordable Care Act on the HHS website. Pay particular attention to the items under "New Consumer Protections" and "Increasing Access to Affordable Care." Here are a few of the many provisions of the ACA that directly affect those of us with chronic illness:

• Children with pre-existing conditions may not be denied coverage.
• Insurance companies may not rescind coverage (there used to be a practice of dropping someone for a minor technical issue when they got sick and tried to use their insurance).
• ACA eliminated lifetime limits on insurance coverage.
• ACA eliminated annual limits on coverage.
• Consumers can appeal decisions made by the insurance company.
• Even citizens with pre-existing conditions will be guaranteed health insurance coverage.
• Young adults can stay on their parents' insurance plans until age 26.
• Limits on insurance companies' rate hikes.
• Linking Medicare payments to hospitals with their quality of care - the better their patients fare, the more money they can make.
• Prohibiting discrimination based on pre-existing conditions or gender.

That's just the tip of the iceberg - you can read the full list on the HHS website. Everywhere that is says "pre-existing conditions" - that's us. Without ACA in place, insurers can outright refuse to sell insurance to chronically ill people or can make the insurance for us so outrageously expensive that we can no longer afford insurance. The other piece that is very important to my family - and to many of yours as well - is allowing kids to stay on their parents' insurance until age 26. Our son is now 22, and with ME/CFS, plus Lyme and two other tick infections, he is not well enough to work full-time or support himself.

So, what can you do to stop this seemingly unstoppable action? Well, the new President and Republican-controlled Congress are determined to repeal the ACA. But to do so without anything to replace it is irresponsible. They are pulling the rug out from us - and millions of other sick Americans - with only promises that there will be a replacement. We can ask that this process is slowed down and that a replacement is created as soon as possible...preferably before the ACA is officially repealed.

I heard there are 5 Republican Senators who are already in favor of slowing this process down so that it is done right. I have written to these 5 Senators by e-mail to let them know how the ACA affects us, and how its repeal with no replacement would be devastating to us. You can, too. Here are links for e-mailing the 5 Senators or you can call their offices (though I have heard people are having trouble getting through):

Senator Bob Corker, TN - (202) 224-3344

Senator Lisa Murkowski, AK - (202) 224-6665

Senator Rob Portman, OH - (202) 224-3353

Senator Susan Collins, ME - (202) 224-2523

Senator Bill Cassidy, LA - (202) 224-5824

While you're at it, send that same e-mail to your own Senators & Representatives! They will be hard at work on this issue for the next week, so let them know how the ACA affects you and the urgent need for a replacement with many of the same provisions. I found these e-mail addresses just by typing the name, Senator or Representative, and e-mail into a search engine.

Here is the note that I sent to all five (and am now sending to my own Representative (Delaware only has one!) and Senators. Please feel free to copy whatever parts of it apply & then add in your own or your family's experiences & situation. You note doesn't have to be long (I tend to be long-winded!) - just let them know you are here and that heir actions will dramatically affect your life.

We may be sick and often (or always) housebound, but we can still let our voices be heard!

My e-mail:

"I do not live in Alaska, but I represent the needs of citizens across the U.S., as leader of online support groups for those with chronic illness and parents of sick children. I heard that you were one of several Senators in favor of slowing down the process of repealing the ACA, so I wanted to let you know how the ACA protects families like ours, and how its repeal, without anything to replace it, would be devastating to millions of families across the US.

I have been sick with a chronic immune disorder for 15 years that prevents me from being able to work, and I have also struggled off and on with recurring Lyme disease. My oldest son has the same immune disorder (it is genetic), and has very severe Lyme disease, plus two other tick infections; he's been sick for almost 13 years and is now 22 years old. Our youngest son, now 19, also had this same genetic immune disorder for 10 years, but fortunately, his was mild, and he is now fully recovered.

As you can imagine, our medical expenses are sky high. We have excellent health insurance through my husband's employer (I can no longer work), but we still have about $20,000/year in out-of-pocket medical expenses. That does NOT count our portion of the insurance premiums, an additional amount that is automatically taken out of my husband's paychecks each month.

The Affordable Care Act protects us in several ways, though its name alone has become a political lightning rod. We want Congress and others in power to understand that the ACA should not be used to make a political point - families across the U.S. rely on its provisions. The public focus has been on its insurance marketplaces, but the ACA is much, much more than that.

Specifically, the provisions of the ACA that deal with pre-existing conditions affect us and other sick families deeply. If the ACA were completely repealed, with nothing to replace it, then insurance companies could deny us coverage entirely or make our rates so high that we can no longer afford insurance. We already have outrageous medical expenses; without insurance, we would probably lose our house. ACA prevents insurers from taking advantage of sick people. In 2 years, my husband will retire, and we will be buying health insurance on the open market. If these provisions for pre-existing conditions are repealed, I will not be able to get affordable health insurance.

Another part of ACA that affects us and all the other families I represent is the provision that allows us to keep children on our family insurance until age 26. Without this provision, our son would be in big trouble. At 22, he is not healthy enough to work full-time or support himself (he is working his way through college, a few classes at a time, and will graduate next year). Without the ACA, he would have to get his own insurance...and again, insurance companies could either deny him completely or make the rates so high that we couldn't afford it. In any case, it would be far more expensive than keeping him on our family policy.

If Congress believes that ACA is not working as currently written, then it needs to be revised or replaced, not simply repealed. To repeal it without another option ready to go into place is irresponsible and leaves millions of sick Americans - including many, many children - in serious trouble. It's political posturing without regard for its effects on American citizens. There are between 1-2 million American adults with the same debilitating immune disorder my son and I have (the number of children has not been counted) - and that is just ONE disease.

Please do all you can in your position to slow down this process and come up with an alternative to ACA before pulling the rug out from under citizens like us.

Thank you for your time and concern for Americans like us -

Suzan Jackson"