Keeping Your Head Above Water in a High-Risk Pool

NOTE: The Affordable Care Act is often referred to as Obamacare. They are the same Act.

More often than not, when a bill dies in Congress (or is withdrawn due to lack of support), it is not revived until the next Congress. (There is a new Congress every two years.) However, healthcare reform is a big enough priority for the White House and Congressional Republicans that it appears lawmakers will continue to negotiate with various caucuses to find a passable solution as soon as possible.

Recently, after negotiations between moderate and conservative Republicans in the House, an amendment to Paul Ryan’s American Health Care Act was offered. The amendment would keep all of the Essential Health Benefits and several other provisions of the Affordable Care Act, but allow states to opt out of coverage if they could prove that opting out would keep consumer costs down, cover more people, or if it would be in “the public interest of the state.” There is no specific definition of what is considered “the public interest of the state.” Secretary of Health and Human Services Tom Price would be responsible for approving or denying state waiver requests.

How could the amendment affect you?

With a waiver in hand, a state could get rid of the protections for people with preexisting conditions by establishing high-risk pools. A high-risk pool is exactly what it sounds like: everyone considered a high-risk/high-cost patient is grouped together under less-than-favorable insurance policies. According to a 2015 analysis by the Commonwealth Fund, high-risk pools would do exactly what Obamacare was trying to prevent: increase costs to the population with the highest medical bills and/or severely limit the coverage offered to those in the high-risk pool.

High-risk pools are not new to health insurance markets. The Affordable Care Act banned high-risk pools, but before that, they were used in 35 states and as a stop-gap measure between the passage of the Act and when it went into effect. Evidence from previous high-risk pools supports findings that state-based programs, while charging high-risk patients up to 250% more than healthy patients, came with insanely high premiums and out-of-pocket maximums.

The government knows it would have to fund states’ high-risk pools. Currently, they plan to offer subsidies totaling $25 billion over 10 years. However, independent estimates place the figure needed to fully fund the pools at $178 billion. In order to control consumer costs at all, coverage offered to high-risk patients might be whittled down to nearly nothing at all.

There are documented cases of patients in high-risk pools paying $18,000 and $25,000 premiums, even with limited coverage. According to the Center for American Progress, I could pay an additional $5,600/year. Even people with mild asthma could pay over $4,000 more than they do now. Patients with certain kinds of cancer could end up paying over $142,000 more, and pregnancy could cost up to $17,320 more.

What does this mean in practical terms?

The numbers are good to know, but they're cold. I started this blog hoping that eventually, I would be able to support myself with it. If the above reforms pass, that will become much more difficult. Finding an individual health insurance plan that will cover a diabetic woman who already has complications would be next to impossible for states with waivers, and if I do find one, it will be prohibitively expensive.

Will we have to choose which meds we can afford? Will we have to forego the best treatment because insurance policies are no longer required to cover it? 

The good news is, we can do more than just keep our heads above water. We can swim. Only 17% of Americans approve this plan (poll was taken before the amendment, which doesn't actually change anything in the bill), which is a number so low, the remaining 83% surely includes a majority of healthy people. A smart Senator or Congressman won't vote for a bill that is so unpopular in their district. However, to be on the safe side, we might want to make sure our lawmakers know how we feel about it.

Find the people who represent you in Congress and make a phone call. It's a right guaranteed by the First Amendment (petitioning the government for the redress of grievances), and you may be surprised how effective it can be.

 

Broken-Field Running

Yesterday, I went to see my doctor for my quarterly check-in. Every time I go, I hold my breath until I hear three numbers: hemoglobin A1c (long term blood sugar average) for Type 1 diabetes, and creatinine (long term kidney function) and eGFR (short term kidney function) for chronic kidney disease. Those are the three that have to be in range for me to breathe easy.

This time it was like waiting for the axe to fall. I had been in tight control for years until a really bad work situation knocked me off my routine. The hours and commute were awful, with no flexibility, and I was told that it was a hostile work environment before I even started, but I didn't have a choice about taking a project. In the way of government contracting, I'd been without a project for too long, and I was in danger of being laid off (and losing my health insurance).

It was gradual, but I eventually dropped both my meal plan and exercise routine. Without this, I end up yo-yoing (blood sugar bounces out of control). This makes me tired, which makes me less active, feeds high blood sugar, you see how it goes. I’ve been struggling for over six months. That’s three rounds of blood tests. Every quarter, the monster that is my conditions grows another centimeter.

The kidney numbers have the biggest impact. A couple of years ago, my doctor actually upgraded me a stage of my kidney disease, from stage three to stage two (stage 1 is considered normal/healthy). I’d been convinced that I would need a transplant eventually, and I felt like I’d been given a reprieve from, well, something. It’s the deterioration of those numbers that scares me the most. When the doctor told me that my creatinine and eGFR were the same as last quarter, I thought I’d escaped serious consequences for another three months.

My subconscious knew better. I had been doing better, picking up more cardio and putting limits on my food intake. But, it wasn’t enough to make up for months of ignoring my regimen. I knew I was still out of control because I still felt out of control. I wasn’t surprised when my doctor told me that my A1c was just past the line that marks where you’re safe from complications. More like resigned. Maybe a little disappointed, or a lot disappointed. It had taken a lot of work to maintain my regimen. I had lost a considerable amount of progress, not just in following the regimen, but also in the execution of the regimen. I’d lost strength, energy, my appetite had grown, I’d gained weight.

I want so badly to get back to where I had been, but my motivation is dragging. It’s like having a second job. No, third, with the blog. And I’m just so tired. But without good diabetes control, I won’t be able to do everything I want to.

Broken-Field Running.jpeg

I know I can’t pick up where I left off. The pain in my shins tells me I will have to work up to my previous running speed. I expect there will be starts, stops, changes of direction, like broken-field running in football. You take the best path you can find, even if it's not a straight line. So I’m going to start small. Task 1: No more skipping cardio. Even if it’s walking, I have to move before work. Oddly, that starts with Task 2: going to sleep on time. (Sleep on time = awake on time = energy to exercise.) Two tasks is enough for now.

Each chronic or autoimmune condition comes with a different capacity for control. I’m pretty lucky. I can control many aspects of my conditions. Not all, but more than most, I think. And the better we get to know our conditions, the more we can exert whatever control we do have.

So, the question(s) of the week: how well do you know your monster? As well as you would like? Well enough to know what kind of control you can exercise? And when you do falter for a short time or a long time, how do you gain your feet again? Do you have a plan?

Ten EHBs and A Provision

There's a lot at stake for us as our elected officials try to reform healthcare. We should all understand what it means when the newspapers say they are removing this or that requirement from a proposed bill, and since it appears that Congress will continue its efforts toward healthcare reform, I wanted to discuss some of the things that will make or break their efforts, things that will affect you, no matter what condition(s) you have, or even if you have no condition at all. (Read about the first effort to reform Obamacare here.)

It’s hard to believe that it’s only been seven years since Obamacare, or the Affordable Care Act, was passed. Before that, insurance looked very different than it does today. The main reason for that is that Obamacare mandated that certain things be covered in every plan. One of the things on the table is the removal of all the Essential Health Benefits (EHBs) in an effort to control costs.

This would control costs by severely reducing the number of people covered by insurance. Those people would not see a doctor as often, potentially losing control of their conditions, and would end up going to the more expensive emergency room as a result. (Emergency rooms can’t legally turn patients away, regardless of their ability to pay, and unpaid hospital bills default to the taxpayer.)

How many EHBs have you used over the course of your condition? (I will mark all the ones I’ve used.)

  1. Outpatient care – all your doctor visits where you don’t have to stay overnight.
  2. Emergency room visits
  3. Hospital treatment for inpatient care
  4. Prenatal and postnatal care -- maternity care preceding and after birth of baby. This is an important one because in the bad old days, pregnancy wasn’t covered at all. Since the majority of insurance policies cover ‘accidents and illness,’ and pregnancy is neither accident nor illness, it didn't qualify. Pre-natal wellness visits, blood tests, recovery, and more were paid for out of pocket. Not to mention that the baby sometimes wasn’t covered for the first 10 days, so that if there was something wrong, it would be classified as a pre-existing condition, which is also not covered.
  5. Mental health and substance abuse services, drug and alcohol rehab. This is the rule that helps people with opioid addiction and veterans with Post Traumatic Stress Disorder.
  6. Prescription drugs – no explanation necessary.
  7. Rehab and rehabilitation services and devices -- to aid in recovery in case of injury, disability or chronic condition, including physical and occupational therapy, speech-language pathology, psychiatric rehabilitation, and more.
  8. Lab tests
  9. Preventive services, including counseling, screenings, and vaccinations and care for managing chronic disease – annual physicals, Pap tests, mammograms, colonoscopies, etc.
  10. Pediatric services, including dental and vision for children.

That's nine out of 10 for me.

Now the provision that pulls it all together, because even if you have access to all of the EHBs, if they're too expensive, access doesn't matter. The 'community rating' provision of Obamacare says that people with pre-existing conditions don't pay more for coverage than their healthier peers. It says that no one in a set geographical area (community) can be charged more than anyone else in that area for the same amount of healthcare coverage, regardless of circumstances like gender, occupation, industry, weight, claims history, or most important to us, health status (pre-existing conditions). Right now, the only factors an insurance company is allowed to consider are family size, age, geographic location, and tobacco use.

In a relatively short time, these regulations have become important to us. They allow us a higher quality of life. How much more would you have to pay for your condition if the EHBs and community rating provision were eliminated? If you feel strongly about keeping the above provisions, tell the people in charge of the reform effort, and not just on Capitol Hill. Rumor has it, some states are moving forward without Washington.

(Here is a link to Project Vote Smart, which will tell you who works for you, from the president right down to local judges.)

Conversations with a Retired Healthcare Executive (Who Just Happens to be My Father)

Chapter 2: How do they figure out what plans to offer and how much they cost?  

Health insurance plays an outsized role in our lives. But does anyone really know how it works? Or, for that matter, what it really says? In this series, I will be talking to my dad, a retired healthcare executive, about a variety of topics to get some clarity on private (employer-supplied) health insurance.

Jeremy Sachs spent 30 years working for a Fortune 500 insurance company. During much of that time, as House Counsel for the Employee Benefits Division, he advised corporate managers of the Division on a wide range of legal issues relating to the Company's group health insurance policies, including during the times when the Health Insurance Portability and Accountability Act (HIPAA) and the Americans with Disabilities Act (ADA) were passed and instituted.

This series does not apply to Medicare, Medicaid, Obamacare (The Affordable Care Act, or ACA), or individual health insurance, unless otherwise specified.

The Players

Insurance Company

  • Sales Rep/Marketer—liaison between the insurance Company and your employer
  • Underwriters – determine the risks involved for each policy
  • Actuaries – mathematicians who determine the cost of a policy

Your Employer

The Process

Negotiations for a new health insurance policy or an update to an existing policy are long and complicated

They start with your employer. The insurance company’s sales rep sits down with your employer’s Benefits Manager and negotiates what your employer wants included in the insurance policy: what level of risk the insurance company is willing to take; what the deductibles will be; the method will be for computing a provider’s “reasonable and customary (R&C) charges”; and, what percentage of those R&C charges the company wants to cover. (That’s when the policy says they will cover 80% of reasonable and customary charges after the deductible or 70% of psychological therapy visits.)

Once the insurance company knows what the employer wants in the policy, the representative collects certain types of information about your employer, including:

  • Type of work (office/manufacturing/labor/academic/government, etc.)
  • Number of employees
  • Type of employees and percentages (skilled, management, executive, etc.)
  • Employee retention (In the insurance industry, employees who stay at their jobs longer may suggest a more stable lifestyle – that is, employees who keep a job for only a short time, and then move on are considered higher risk.)
  • Claims history from previous years. (A Group Policy issued to a brand-new company may cost more, since the Insurer will have to guess how high the first yearly payout of claims will be.
  • Company financial stability

And about you. Since it’s illegal to ask specific employee health questions, the insurance company will ask questions about the members of the group:

  • Gender
  • Age
  • Race/Ethnicity
  • Percentage who have dependents.*
  • Other general demographic questions

* Dependents are important because their – both children and spouses – costs are calculated at a higher rate than that for the primary insured. This is because since employees come to work on a regular basis, they are assumed to be generally healthy. But no such assumption can be made for dependents. Spouses and kids, as a group, tend to have more or higher claims than employees. (The kids I know definitely get sick or injured more often than the adults, but I am not sure why the spouses do. Dad didn’t know, either.)

These and other factors are all thrown into equations when the insurance company calculates the cost of the individual benefits offered in the policy, and the premium for the policy overall.

Once the sales rep has collected all the information from the employer, they send it to the underwriters. Underwriters determine how risky it will be for the Insurer to cover the group.  Keeling over from a heart attack is more likely in a sedentary cube farm than on an active factory floor. But losing a finger is more likely on a factory floor than in a cube farm. Unless you’re using the copier wrong.

Or, if the Company is located, say, in Florida, the group may have a more employees with respiratory conditions than in, say, in the Colorado Rockies, where the air tends to be purer. 

The underwriters start with “standard rates”. They take the gathered information and use complicated algorithms to determine how much risk of a claim is likely for each type of coverage that the employer wants in the policy. They then assign higher degrees of risk for any elements of the group that don’t fit the algorithm.  Then they send their calculations to the actuaries.

The Actuaries are the mathematicians who figure out how much to charge. Actuarial tables are always being updated. As treatments and knowledge around a condition improve, probabilities of severe consequences are adjusted and sometimes costs go down. But there are also new conditions that can’t be treated that have to be factored in. They create their own algorithms around the Law of Probabilities -- that you will need X treatment, based on current national or local (industry) claim experience. They create rates to be charged to the group based on a series of calculations of the probability that employees and dependents, as a group, may at some point need all or most of the insurance for the conditions covered by the policy. Then they figure out the rates for your employer’s Group Policy. 

With the rates in hand, the sales rep for the Insurer finally presents the policy package to your Benefits Manager. The package includes rates, definitions, and descriptions of what will be covered. These are the sections that specifically explain the insurer’s LIMITATIONS on what’s covered and lists of the risks that it will not cover at all (EXCLUSIONS), as well as a whole host of administrative requirements and other explanatory material.          

A squeaky wheel can impact your insurance policy.

So, after two pages, why does all this matter? Because you’re not as powerless as you think.

There is a long negotiation involved once the initial figures are given. Both sides are worried about competition. Insurance companies don’t want to lose clients to another insurance company because of lower prices, and your company doesn’t want to lose good employees to a competitor with better benefits. 

And that doesn’t even touch on unionized industries. Unions will often negotiate on the cost to employee and breadth of coverage. Like better maternity coverage for a younger employee pool or better rehab coverage for an older employee pool.

So, if you have an opinion, tell your employer. Start with the Benefits Coordinator or someone in Human Resources for companies that aren’t big enough to have a Benefits Coordinator. We had issues a few years ago with the pharmacy provider my company was using, and after a few years, there were enough complaints that my employer switched providers. [CS1] 

It’s not a guarantee, but it never hurts to speak up.

Bonus:

Every policy has an incurred but not reported (IBNR) reserve for health insurance claims, commonly referred to as a ”tail.” The tail covers late claims submissions. Sometimes I just don’t have the time and energy to submit claims, especially the out of network ones, so I wait until I do. The tail, based on the size of the policy, covers those late filings. The length of this grace period, called the IBNR runoff, varies with the policy, but is often six to twelve months. So don’t give up on reimbursement if you’re a little late. Know your IBNR runoff period, and give yourself a break.

Conversations with a Retired Healthcare Executive (Who Just Happens to be My Father)

Health insurance plays an outsized role in our lives. But does anyone really know how it works? Or, for that matter, what it really says? In this series, I will be talking to my dad, a retired healthcare executive, about a variety of topics to get some clarity on private (employer-supplied) health insurance.

Jeremy Sachs spent 30 years working for a Fortune 500 insurance company. During much of that time, as House Counsel for the Employee Benefits Division, he advised corporate managers of the Division on a wide range of legal issues relating to the Company's group health insurance policies, including during the times when the Health Insurance Portability and Accountability Act (HIPAA) and the Americans with Disabilities Act (ADA) were passed and instituted.

This series does not apply to Medicare, Medicaid, Obamacare (The Affordable Care Act, or ACA), or individual health insurance, unless otherwise specified.

Chapter 1: What is health insurance?

All insurance is about risk. A company that sells homeowner's insurance charges premiums to accept the risk that a tree might fall on your house. A company that offers car insurance accepts the risk that you might get into a car accident. Those insurance policies are contracts between you and an insurance company; group health insurance, the kind that is offered by your employer, is a contract between your employer and a private insurance company. Most commonly, you and your employer share the cost of a monthly insurance premium. In this case, the insurance company accepts the risk that you might need the type of medical treatment specified in the policy, treatment that you may not be able to afford otherwise.

But keep in mind that health insurance companies are also businesses, like all for-profit businesses: responsible to their shareholders. It’s not easy to wrap your mind around the fact that something so personal to you is business as usual to them, but understanding that is vital to understanding how insurance works.

A Brief History

Insurance used to be a lot less complicated before the proliferation of technology and advanced treatment methods, like platinum-based cancer treatments. It was also a lot less expensive before those advances (you know, platinum). 

Now we live in an age where, in many cases, our quality of life has improved exponentially. The downside is that chronic and autoimmune conditions have become a competitive market. We will always fuel that market, looking for the next drug or procedure or device that will alleviate symptoms, reduce pain, or extend lives that otherwise might be shorter than average. Insurance often is the only way for people who need the latest treatments to actually be able to afford them.

So, where do you fit?

You’re the risk. Sort of. I mean, is it really a risk if you already know the outcome? You will definitely need medical services. Health insurance covers the “care and treatment” of “accident” or “illness.” The tricky part is defining the “accidents” and “illnesses” that are covered by the plan, and what is “necessary” to treat them. Before managed care options like HMOs and PPOs, the patient’s physician decided what was necessary. Now, it’s up to the insurance company and a committee of outside medical professionals.

When the insurance policy’s definitions of “accidents” and “illnesses” are uncertain, a committee inside the insurance company looks at similar cases and the circumstances around your case, and makes a judgment call that will (hopefully) serve both the company’s interests and your own, as the patient.

When the doctor and the insurance company disagree on what’s “necessary”, they negotiate payment. This is labor-intensive, and a common reason that some doctors’ offices, especially private practices, do not take insurance. In those cases, reimbursement from the insurance company goes through you.

In both instances, you can appeal the decisions made by the insurance company, but it’s an uphill battle. For example, in the “necessary” instance, I used to take an expensive injection for anemia ($1,200/month). My symptoms were mild, but without it, there was always an underlying tiredness every day, even when I got enough sleep. The insurance company decided to set their standards against the medical community’s recommendations and make it harder to qualify for the medication.

I was not the only one who fell into the mild category. Several people with my conditions were also affected. The doctors tried to negotiate coverage with the insurance company, but it didn’t work.

It was really hard to accept that someone I’d never met had switched out the experts who knew my situation for their experts, who had no idea how it felt to drag through every day. For all intents and purposes, strangers had made a judgment call that would restrict oxygen flow to my body, including to my brain. (That’s what anemia is: lack of iron in the bloodstream, and iron delivers oxygen.) It was so personal. My day-to-day functionality, and the only option I had, was to pay the $1,200/month. The only way I could get there was to stop paying rent.

Understand that, when you enroll in an insurance plan, you become what is called a "third-party beneficiary." When your plan goes into effect, you become entitled to certain rights and coverages that your employer negotiated to be included in the policy. However, what they don’t tell you is this: no health insurance company accepts every single possible health risk. The company’s professionals -- actuaries (mathematicians) and underwriters (risk evaluators) -- decide how much risk the company can assume and still earn a profit. Because of that, every insurance policy contains specific sections that detail limitations and exclusions on benefits payable under the plan. Sometimes that means specific things like my anemia drug.

And when you are evaluating which policy is right for you, remember that these limitations and exclusions are not just found in the obvious sections. There are others listed throughout the policy. Make sure you’ve seen all of them before signing up for health insurance.

So, next time you are considering enrolling in private group health insurance, start your evaluation with the definitions section to help you understand what your plan does cover. Look for the limitations and exclusions section to see what your plan doesn’t cover. This will help you set expectations as to what doctors and treatments you will be able to afford under the plan for the coming year.

If you still have questions about the policy, reach out to your employer’s benefits coordinator or Human Resources department for clarification.

And don’t be afraid to ask questions about your specific condition and circumstances. It sucks to buy insurance and then find out after the fact that the cutting-edge treatment your doctor wants for you is out of financial reach.

So, Why Yet Another Blog? And Why This Blog?

Because if you have an autoimmune or chronic condition, the likelihood is that I have been where you are. 

When you were diagnosed, were you scared? Bewildered? Confused? Angry? Numb? Did you feel helpless or stupid? I was too young to understand completely, but I remember clearly how angry I was. Very angry. Furious. I didn't know then that it was a defense to cover helplessness. It was so big. DIABETES (it always seemed weird that it's never capitalized in print). I didn't know what it was, how it worked, or what it meant for the rest of my life. Everything was changing. I thought, what do I do now?

There was other stuff, too -- subconscious stuff. I didn't realize it until recently, but I also felt a deep sense of betrayal. It makes sense. What's worse than when you betray yourself? And what else can you call it when your body turns on you and literally attacks itself? You are supposed to be able to trust yourself more than anyone else on the planet, right? But you can't. Nothing works like it's supposed to anymore. 

My situation was made even worse by the fact that I thought I had already paid my medical "dues." You know those commercials for the meningitis vaccine? I had that. Eight years before my diabetes diagnosis, I got B strep meningitis. I was the only kid who survived it that year, and even then I ended up in a wheelchair for 18 months. It was only through my family's support and sacrifices that I won that vicious, ugly war.

It was a real slap in the face to realize that wasn’t the end of it, that instead of winning a war, it had just been the opening salvo, a mere battle in a conflict that would last the length of my life.

Decades later, it makes me sad sometimes to think about who I might have been if I had been healthy. Then I think about how far I've come. Yes, my conditions (I have several now) are hard. Inconvenient. Time-consuming. But I like the life I have and the person I have become. I am proud of the strength that came from the crucible of my medical issues. I am grateful for the relationships I have, every one of which is worthwhile and valuable (you tend not to waste time on superficiality when your time and energy are limited). And maybe, just maybe, I have learned enough to trust myself again.

So, why this blog? I want to use my experience and contacts to arm you with the tools you will need to navigate both your condition and our ridiculously complicated healthcare system. I figure that if I can help just one person avoid my mistakes or come through the low points better than I did, I can consider this a successful venture.

Obamacare repair, not replacement: more than a change in messaging

Please note: This blogpost is by Mark Weller and originally appeared February 13, 2017 on Soapbox: A Politics and Policy blog here. 

Mark is a Partner in the Public Policy & Regulation practice and Health Care practice at Dentons, a multinational law firm. Having worked on and around Capitol Hill for over 30 years, he is an expert in the politics around healthcare and knows the environment from every angle.

Note #2: Obamacare is a common reference to the Affordable Care Act (ACA). They are the same thing.

Last week Republicans on the House Energy and Commerce Health Subcommittee held a hearing on four Obamacare replacement bills. The move is consistent with recent Republican leadership comments that they plan to replace the Affordable Care Act with a series of small measures instead of one major replacement bill.

But at the same time, President Donald Trump in a Fox interview said that an Obamacare replacement may take until 2018. And now House Speaker Paul Ryan and leading committee chairs are saying they want to “repair” the ACA, not “repeal and replace” the law.

Legislating is hard

What’s going on here? The President is acknowledging what many policymakers already knew. Despite the campaign rhetoric that Obamacare would immediately be repealed and replaced, the process could have serious political repercussions if not done right.

There appears to be general agreement about moving away from the ACA’s insurance benefit mandates. Also, the aforementioned House subcommittee explored popular issues like how to deal with people with pre-existing health conditions, how to spur people to keep continuous coverage throughout their lives, and loosening age-rating bands. Alongside Democratic taunts that Republicans don’t know what to do after the “dog has caught the car,” or in some versions is actually trying to drive the car, the simple fact is finding a consensus on how to replace the ACA will take longer than expected.

 Individual mandate is instructive

The repeal of the individual insurance mandate provides a perfect example of the dilemma Republicans face. The mandate that individuals purchase health insurance or face a penalty is a core feature of Obamacare. Republicans hate mandates and see the provision as symbolic of Obamacare's overreach in attempting to correct deficiencies in the individual insurance market.

There is broad agreement that the law should bar insurers from discriminating against people with medical problems as long as they remained enrolled in an insurance plan. But if you eliminate the mandate that that people buy insurance, you’re left with a worsening and dysfunctional market that attracts high-risk enrollees and leaves insurers with a pool of customers who are older and less well.

To cover those with existing health conditions, Republicans have floated the idea of continuous coverage–requiring everyone to maintain health coverage throughout their lives–although that sounds like a mandate to many and the GOP is still figuring out how to do it. Other ideas, like levying a surcharge on those who fail to sign up for insurance or to automatically enroll individuals eligible for subsidized coverage who don’t sign up, don’t sit well with the more conservative wing of the GOP.

Crowded Congressional Calendar

The Congressional calendar looms large in the analysis of how to repair or replace Obamacare. During the Republican retreat in Philadelphia, Speaker Ryan said he planned to bring a budget reconciliation package–that requires only 50 votes to pass rather than the usual 60–to the House floor by the end of March. This measure is expected to contain repeal and some replacement elements.  But a leaked recording from the same GOP retreat last month shows a party that remains divided and uncertain about how to move forward.

The delay on ACA “repair” pushes back legislative activity on almost every other priority. In addition to action on Obamacare, Republicans want to address an overhaul of the tax code and a massive infrastructure bill. On top of that, Republicans hope to pass all 12 fiscal year 2018 appropriation bills before Oct. 1, including funding for a wall on the Mexican border. Congress hasn’t passed its appropriations bills in two decades. In addition, there are several must-pass deadlines. Congress needs to fund the government before money runs out on April 28 and raise the debt ceiling by this summer. There is widespread concern that Trump and GOP leadership have simply identified too many big-ticket, politically thorny items to tackle in year one.

On Obamacare, expect a drawn out fight, not just between Republicans and Democrats, but within the GOP. The Obamacare alternatives being considered may not prove any more popular.

Updates by Claire Sachs: March 13, 2017

House Speaker Paul Ryan introduced the American Health Care Act (AHCA) on March 6, 2017. It was referred to the Ways and Means Committee and the Energy and Commerce Committee on March 8, 2017, both of which approved it on March 9, 2017. The main differences between this law and the Affordable Care Act (Obamacare) are that:

  • The Medicaid expansion would be phased out by 2020
  • The individual mandate (tax penalties for not being insured) would be replaced by age-based refundable tax credits.
  • Insurance companies could charge older patients up to 5x more than they charge younger patients instead of 3x.
  • Insurance companies could charge a 30% penalty to people who let their coverage lapse.
  • Taxes on health insurers, pharmaceutical and medical device manufacturers, and high-cost employer health plans (aka Cadillac plans) would be repealed.
  • Medicaid would be barred from reimbursing Planed Parenthood.

Also on March 13, 2017, the Congressional Budget Office released its report on the AHCA. It would cut $337 billion from the deficit over 10 years, but it would also cut coverage to 14 million people by 2018, increasing to 24 million by 2026. Under the AHCA, insurance premiums would be 15-20% higher in the first year compared Obamacare, and 10 percent lower on average after 2026.

March 23, 2017

The House of Representatives was due to vote on the AHCA this evening. Earlier today, members of the House Freedom Caucus, the conservative wing of the Republican party, met with leadership and the President to negotiate last minute amendments to sway caucus members. They discussed rolling back maternity coverage and other possibilities, but negotiations were unsuccessful. Ultimately, the vote was postponed because there were not enough votes to pass the bill.

March 24, 2017

Late yesterday, President Trump issued an ultimatum to Congress: vote on the AHCA or he moves on to the next item on his agenda.

Congressional Republicans agreed and scrambled to negotiate with the Freedom Caucus. In order to make the bill more appealing, they removed the 10 essential health benefits Obamacare required in every plan. These benefits cover: outpatient services, emergency room care, hospitalization, maternity costs, mental health/substance abuse services, prescription drugs, rehabilitative and habilitative services, lab tests, preventive care such as vaccines and annual physicals, and pediatric vision and dental care.

In the end, it wasn't enough. Speaker Ryan pulled the bill off the floor after over three hours of debate because he could only afford to lose 22 Republican votes, and 36 Representatives had declared their opposition, with an additional 15 leaning toward a "no" vote.

Republicans can modify the bill and reintroduce it, but without significant changes, it is unlikely to win enough support to pass this congress.

 

The Challenges of an Invisible Condition

Most of the people reading this blog have conditions that are invisible. If I had a nickel every time I heard, “you don’t look sick,” I wouldn’t be driving a teenage Honda. I am always pleased to hear it, as it is a testimony to my good control, at least most of the time.

But, no matter how “normal” I look to others, the fact is that I have a lot more mandatory work to do to live every day than the average human being. For example, I can’t just skip a meal when I’m not hungry. I have to either alter my insulin or make adjustments so my body doesn’t get mad at me (yes, sometimes I think of my physical self as a separate entity with its own agenda, especially when I have blood drawn and my veins run away, like they’re playing hide and seek). This might not matter most days, but when it does, it REALLY does.

How do you explain to a boss that no, you don’t have a fever, and yes, you are probably functional enough to work from home, but you can’t come into work today because you have to deal with the side effects of your condition? I do not like to be around people if I just can’t get my blood sugar down. It’s a very vulnerable place to be. I feel like crap and I am scared because I can’t figure out what’s going on. Also, I like the people I work with, but not enough to let them into that particular corner of my life. If nothing else, it would totally undermine their view of me as a competent co-worker.

Or how do you handle the looks you get if you park in a handicapped parking space, but you don’t look handicapped? The world has a lot of righteous judgment for people they’ve never met.

Then there are the times, especially if you are seeing a provider who doesn’t know you well, when you feel like you have to justify the reason for your visit. I remember going to see my GP—who does know me well—for a sore throat that had lasted upwards of three weeks before I went to see him. I’d been checking my temperature and it didn’t seem like I had much of one, especially since I tend to run about a point lower than average, so 98.6 is actually high, more like 99.6. When he checked my throat, I told him I wished I’d come earlier in the day because it didn’t hurt in the afternoons as much as it did in the mornings, and I assumed the inflammation would be more visible. He told me I didn’t have to justify myself, that he  believed that I had what I said I did. I think I almost cried, which is not something I do publicly. Ever.

I have always coped by leading with my chin—thick skin, don’t care what others think, defensiveness as an end in itself. This is not a position I would recommend. It can be very isolating. To give you an idea, the people who are closest to me aren’t there because I invited them in; they are there because they thought I was worth the effort of pushing past that rough exterior. They have stuck with me through a lot, and I will never be able to express how grateful I am for their friendship.

I think... I think that the healthiest way to cope is to accept that everyone has their own version of normal. You can share as much or as little as you are comfortable with. But without your health, you have nothing. Don’t push yourself so hard that it affects your condition. Accept help from the people who love you. Teach them how. They are your safety net. And know that there are going to be days when you have to put yourself first. This is not something to be ashamed of, it just is.

How did Henry David Thoreau put it? “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms...”[1]

 It’s hard to hear, but our lives are limited. Do what you need to do to get as much as you can out of what you have.

[1] http://www.goodreads.com/quotes/2690-i-went-to-the-woods-because-i-wished-to-live