Congress Turns Deaf Ear to Blood Cancer Patients

By | May 4, 2017

Note:   While I write this, the House of Representatives voted to pass the Affordable Health Care Act. Now the bill moves to the US Senate. Republican friends have assured me that I shouldn’t worry because this will never come to pass. The US Senate will not let this become law. I hope they are correct. But to take people at their word, I must be a responsible citizen and consumer and understand what Congress just approved and celebrated at the White House today. May 4, 2017

We all know the Affordable Care Act (ACA or ObamaCare) has many areas in need of significant improvement. And it also requires insurers to cover people with pre-existing conditions, allows adult children to remain on their parents’ plans until age 26, and removed lifetime caps.  Unfortunately, the bill passed by the House does not build on the strengths of the current system. It removes $600 billion in funding over several years; dismantles the system; eliminates the economic power of the collective with a large, diverse pool of patients; shifts access for people with pre-existing conditions to high-risk pools run by each state (with optional waivers to federally mandated minimum standards); and prohibits one legal procedure from being covered by qualified health plans eligible for a tax credit. And there are no measures to address rising costs throughout the illness care delivery chain.

Georgia Blood Cancer Survivors Meet with Our Representatives

On Wednesday, May 3rd I was one of five Georgians with the Leukemia and Lymphoma Society (LLS), who met with Representatives Rob Woodall (R) [GA-07] and Barry Loudermilk (R) [GA-11], and staff of Rep. Jody Hice (R) [GA-10] and Senator David Perdue (R) to discuss concerns about our current health care system. We shared the Federal Legislative Priorities of the Leukemia & Lymphoma Society and focused on a couple of particularly timely issues:

Leukemia & Lymphoma Society  2017 Legislative Priorities:

  1. Protecting Access to Quality, Affordable Care

Guarantee access for cancer patients to purchase quality, affordable health insurance; Promote affordability with minimum quality standards; Ensure quality with premium assistance and cost-sharing limits that allow a cancer patient to use their coverage; and Provide stability for the long term.

  1. Removing Barriers between Patients and Cancer Therapy

Reduce out-of-pocket costs for Medicare patients; Oral parity for anti-cancer drugs (HR 1409).

  1. Accelerating New Therapies & Cures for Patients

Patient engagement in drug development and approval; and Targeted improvements in FDA’s Expanded Access program which facilitates patient access to investigational drugs when they have no other treatment options. (LLS opposes legislation, such as the Right to Try Act (HR 878/S 204), that does not address the core impediments for patients seeking access to these experimental therapies.

The legislative staff listened politely to us. The two electeds who met with us, Rep. Woodall and Rep. Loudermilk, shared their passion for the ideology behind the Affordable Health Care Act (AHCA): the federal government is inherently burdensome and wasteful for individuals and business.

Fundamentally, these Representatives want to drive health care finance responsibilities to the States and individuals. Mr. Woodall said the States can be more responsive to their citizens and design programs for their special populations. Mr. Loudermilk insisted that there will be significant savings by getting rid of waste and regulation from the federal bureaucracy; he declined to estimate how much savings that might be.

Georgia LLS meets with Congressman Woodall

From left: Marina Peed, Rep. Rob Woodall (R, GA-7), Michael Pavelec, Piper Medcalf, Nancy Lamanno, Jeff Sachs.

Mr. Woodall said the media is scaring the public about pre-existing conditions. Most Americans get their health insurance through their employer, Medicare, or Medicaid, he explained, so these changes apply to a small percentage of people. He insists that we who play by the rules will have access to health insurance through the High Risk Pools set up by the states.  Woodall acknowledged the amendments which allow states to get waivers to from requirements to cover pre-existing conditions affordably and provide essential care (e.g., preventative, emergency, maternity, hospital care). But he insisted that those waivers are unlikely in actuality because of market forces and states respond to local needs.

We were told that we (including cancer survivors) will all fare better under their plan “if you play by the rules” and “make good choices” because this plan will “bring market competition back.” What’s not to like?

The personal stakes are too high to ignore the details. Especially when corporations make the rules, define good choices, and determine market competition. For-profit companies have a duty to maximize shareholder value. Who gets caught in the tension between corporate mission and profit margin? The patients/consumers.

Under the AHCA, if you DO lose your current insurance coverage and you have a pre-existing condition, you may apply for insurance through your state’s High Risk Pool during its open enrollment period. The eligibility rules will be determined by each state, and coverage, deductibles, co-insurance, co-payments and pricing will vary.

Congressman Woodall assured us that people with pre-existing conditions will not lose their coverage if they play by the rules. When pressed, he indicated that ‘play by the rules’ means maintaining health insurance coverage. That is not the same as guaranteeing access to affordable coverage with affordable deductibles and copays.

Doublespeak Dictionary, 2017 edition

Here are some translations to help understand the impact this proposed health care finance system will have on you and your family.

Play by the Rules: Don’t let your insurance coverage to lapse! Get to know the fine print of your insurance plan. There are many ways your coverage can lapse in spite of your best efforts to maintain coverage, described below.

Make Good Choices: Don’t get any tumors, cancer, diabetes, auto-immune disease, heart disease, sleep apnea, neurological or other chronic illness. Don’t smoke, drink alcohol, climb a mountain, SCUBA dive, pilot aircraft, ride a motorcycle, develop an addiction or get depressed. Don’t be obese. Don’t get in a car crash and don’t get paralysis. And definitely don’t be born with a congenital defect or acquire cancer or other disease as a minor.

Free Market Competition: Allow the for-profit insurance companies to decide who and what they will cover, coverage limits, deductibles, co-pays, co-insurance, and how much they will charge (premiums) with no reliable safety net (the AHCA removes $600 billion in funding by revoking the health care tax on the top 2% of earners, insurance companies, pharma, and a few others).

More Choices:  More choices will be available to insurers to underwrite more selective populations with fewer coverage parameters. Fewer choices will be available to women if women’s preventive and maternity health services are excluded from plans; and the exclusion of Planned Parenthood as a preventive women’s health provider from Medicaid and Medicare reimbursements for services will impact more than 2 million women who rely on it for annual exams, screenings, and contraception.

From Platitudes to the Practical

Let’s take a look at what the AHCA will mean for regular people. Even if you have a good job with great insurance coverage today, you need to be aware of these risks. Here are a few ways your insurance coverage can lapse:

  • Payment for monthly premium is posted 1 hour or 1 day past the payment due date, carrier can cancel coverage for nonpayment and refuse to reinstate. No grace periods required. That’s good business for them; bad for the patient. Remember when banks posted check withdrawals to your account before deposits on same day to generate “overdraft” and “insufficient funds” fees until a regulation prohibited it. Credit card companies also post payments at last possible hour after receipt to maximize the interest and fees they charge.
  • Your employer encounters financial difficulty and delays or ceases payment to health insurance company. Your coverage will be cancelled (lapsed) and you will scramble to find alternative coverage.
  • You lose job with insurance plan and can’t find job with employer with a group plan. You must apply in the individual market. If anyone in your family has a pre-existing condition, they will have to apply to your state’s high risk pool and the rest of the family applies in open market.
  • Family change: divorce, death, severe disability can cause you to lose your current insurance. It is difficult to find replacement coverage and afford COBRA coverage during the transition time.
  • Family may have two or more insurance policies to manage: one plan for each “high risk” family member and family plan for the rest. The documentation and billing is complicated and payment errors can result in delays. Get used to spreadsheet management.

Securing Insurance After Insurance Lapse

If your health insurance is cancelled for any reason, you can apply for coverage from insurance providers in your area. This requires full health information (which is verified by the MIB Group (the Medical Information Bureau) which gathers health data on people seeking health, life, disability, or long term care insurance.

There is no guarantee that you will be offered a policy nor be able to afford a policy and accompanying care due to insurmountable deductibles, co-pays, and co-insurance.

The tax penalty for not having minimum essential coverage under current law is replaced with a late enrollment penalty of 30% of applicable premium if a lapse exceeds 63 days.

Some things aren’t a choice

27% of American adults under the age of 65 (approximately 52 million adults) have a “pre-existing condition” according to analysis by the Kaiser Family Foundation. And what constitutes a “pre existing condition” may be more expansive by insurance policy, insurer, and state.

Employers may already limit insurance coverage based on preferences of the owners, such as preventive health services, oral and other contraception, and abortion.

No Transparency Beyond the Patient

The only stakeholder demonstrating transparency is the individual. When you apply for any type of health insurance, you consent to have your medical information released to the underwriter. They need your history to properly evaluate your risk and price coverage appropriately.


Where is the Money?

The AHCA eliminates the tax penalty for people who do not have health insurance (Yet those without insurance will have a difficult time obtaining coverage).

The AHCA significantly reduces federal investment in the health of the country:

  • Instead of government-subsidized insurance policies offered in the ACA marketplaces, individuals will get tax credits of $2,000 to $4,000 a year, depending on age (for a total of up to $14,000/year for a family making less than $75,000/year). Policies that cover abortion (with Hyde exceptions) are not eligible policies. The credits would be reduced for individuals earning over $75,000 and families earning over $150,000 annually.
  • Medicaid will be capped beginning in FY2020, with payments to the states with a flat per beneficiary payment or a lump sum as a block grant, with fewer federal requirements (such as coverage of family planning).
  • Repeals the 0.9% Medicare payroll tax increase on wages over $250,000 (per household) and repeals the 3.8% tax on unearned income imposed by ACA on high income people (earn >$250,000), health insurers, and drug manufacturers (which total approximately $600 Billion).

There is no call for cost management through transparency or negotiation in pricing of pharmaceuticals, medical implants, tests, procedures, or other components of the health care system. For example, Medicare is prohibited by law from negotiating pharma pricing; it pays “reasonable and customary” rates.

Health Care is a Casualty of the Ideology War

We went to talk to our elected officials from Georgia about access to and affordability of health care for all Americans.  They are focused on reducing role of federal government (by risk shifting to the states) and reducing taxation (by repealing the incremental taxes imposed on select tax payers).  Health care (via the AHCA) is simply a vehicle to deliver change on these ideological values.  Perhaps most disheartening is the lack of curiosity and concern for the consequences of their priorities on the people they claim to represent.

The spirit of community and mutual responsibility is lost on many in our nation’s capitol.

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