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Advocacy >  Rising Healthcare Costs  (Financial Toxicity) ...

threatening Access to Quality Cancer Care

Last update: 06/27/2017


  | New Items on oral cancer drug parity |
 Perspective on Rising Costs | Healthcare Reform  References | In the News

Perspective: Ownership of Drugs Comes with Unique Responsibilities

Index for charities that may help with medical-related expenses

Charities and organizations that can help with paying bills. 

Research and News items

Financial Toxicity, Part I: A New Name for a Growing Problem
S. Yousuf Zafar, MD, MHS1 and Amy P. Abernethy, MD1

Financial Toxicity, Part II: How Can We Help With the Burden of Treatment-Related Costs? | Cancer Network
The Politics of Medicare and Drug-Price Negotiation (Updated)
Financial Toxicity of Cancer
Challenges and Opportunities  EAB-financial toxicity-121316.pdf

Gary C. Doolittle, MD
Capitol Federal Masonic Professor of Oncology
Medical Director, Midwest Cancer Alliance

Financial Toxicity and Cancer Treatment (PDQ®)—Health Professional Version -
National Cancer Institute
The High Cost of Prescription Drugs in the United States:
Origins and Prospects for Reform  full text - Aug 23, 2016 | JAMA | JAMA Network 
Cancer Drug Pricing and Reimbursement: Lessons for the United States From
Around the World 
2016:  New Immunotherapy Costing $1 Million a Year
Health secretary wants to transform how doctors and hospitals get paid - LA Times

Drug costs: Medicare plan on payment for cancer drugs stirs battle - Chicago Tribune 

The experiment could become permanent policy if it lowers costs while maintaining quality. A second wave of experimentation would try to link what Medicare pays for a given drug to how well it works.

Specialist doctors, drug makers and some patient advocacy groups are trying to compel Medicare to drop the plan. Primary care doctors, consumer groups representing older people, and some economic experts want the experiment to move ahead.

Opponents say if that happens, cancer patients will be forced to go to outpatient hospital clinics instead of their local cancer doctor for the latest and most effective drugs. That's because smaller, doctor-owned clinics may no longer be able to afford the upfront costs of cutting-edge medications. In rural areas, patients may have to travel long distances to get to a hospital clinic, they say.

Supporters call that "Medi-scare," a reference to the timeworn political strategy of exaggerating the impact of proposed Medicare changes to frighten beneficiaries.

The rhetoric has escalated.

"It is remarkably insulting that some people today think that cancer physicians in large numbers are saying, 'What's the most expensive way I can treat this patient?' " said Dr. Allen Lichter, CEO of the American Society of Clinical Oncology, which represents some 20,000 U.S. cancer specialists.

Dr. Saltz: The Value of Considering Cost, and the Cost of Not Considering Value
WSJ: Push Ties Cost of Drugs to How Well They Work 
Your thoughts?

Comment:  What is worse than getting no treatment effect, lots of side effects, and having to sell your house to pay for it?

Pay for performance is an interesting idea. Among the deviling details would be how to define performance and if it can/should be based on individual vs. aggregate outcomes? Not to mention how you attribute good or bad performance to parts of combination therapy? It seems doable, however … that prices for drugs on patent can be scaled in some ways to make the system fair to patients and sustainable for the healthcare system – without trashing incentives to develop and test new drugs.

A performance-based system, might help to focus research on achieving bigger clinically meaningful gains and on identifying and validating predictive biomarkers – to limit unproductive toxicities – physical and financial.  KarlS


Key Items on oral cancer drug parity

"10% of patients abandoned their anticancer medicine, and another quarter had some delay in initiating another oncolytic." 12

See for an Action Item -- an easy way to discuss with your elected representative: Advocacy

Drug Companies' Patient-Assistance Programs — Helping Patients or Profits? —
Map of States with oral parity laws: 
PEAC | Myths & Facts about Chemotherapy Parity & The Cancer Drug Coverage Parity Act
Oral Parity Update: It’s Time for Congress to Act | ACCCBuzz
KHN: Some states mandate better coverage of oral cancer drugs
When the pharmacist called to tell Adler his plan had approved him for the drug, she asked how he wanted to handle the charge of $3,200. That amount would cover the 50 percent coinsurance he owed for the first three-week cycle of 21 pills, after which he would take a week off and then start the process all over again

Adler, who used to own a stationery store and has an individual policy, couldn't believe it. "No, it must be $320," he remembers saying. Adler's out-of-pocket costs, after 13 cycles of the drug, were $42,000. Family members helped pay.

Under an oral oncology parity law, his situation would probably have been quite different. The out-of-pocket maximum for the medical benefit part of his policy is $3,500. "It would have cost me $3,500 for the whole year instead of $3,000 for one month."
* Medscape, 2013:
 Abolishing High Co-pays for Oral Chemotherapy: Why Is a Federal Law Needed?
* News Article : More Assistance Programs to Accept Medicare Beneficiaries 

Relevant to current concerns about high out of pocket costs for on-patent cancer drugs:

BETHESDA, MD, 12 May 2006—A growing number of drug manufacturers are rethinking their decisions to bar Medicare beneficiaries from patient assistance programs (PAPs).

The AstraZeneca Foundation announced Wednesday that its assistance programs are now open to all Medicare beneficiaries who meet financial and eligibility criteria. The programs had previously been closed to Medicare beneficiaries who had enrolled in a Part D prescription drug plan.

Also this month, two companies—GlaxoSmithKline and ELi Lilly— announced that qualified Medicare beneficiaries who do not sign up for a Part D drug plan can enroll in the companies' assistance programs. Both companies had previously stated that all Medicare beneficiaries would be ineligible for the programs.

* ASCO Answers: Managing the Cost of Cancer Care

Includes Financial resources.

5 years ago today, we released the first edition of our booklet for patients and caregivers on managing the cost of care. And, it’s gone through several updates since then, including for 2014! Get our new update of “Managing the Cost of Cancer Care” (PDF).

* Unsustainable prices of cancer drugs: from the perspective of a large group of CML experts - 

The doctrine of justum pretium, or just price, refers to the “fair value” of commodities. In deciding the relationship between price and worth (or value), it advocates that, by moral necessity, price must reflect worth. This doctrine may be different from the doctrine of free market economies where prices reflect “what the market bears,” or what one is willing to pay for a product.

Advocacy perspective on rising health care costs and the danger

Patients with life-threatening disease have immediate worries but increasingly we must worry about receiving timely access to quality health care services - and if we can pay for it. 

Can we pay our rent and the copayment for the oral drug we need? 

Can we afford to receive an expert second opinion - or find a specialist with an opening within a month? 

Can we make the payment on our  insurance premium if they continue to rise?   Will our doctor be able to see us in a timely manner when our condition changes?  Must we wait months for the test that determines our fate .. and longer to learn of the result?   Are the monopoly-based prices for cancer drugs under patent protection ethical, just or sustainable?9  

The health care system is growing in complexity - rapidly, driven by what has been called "disruptive technologies  - the ability to test and treat disease in very expensive new ways.  The complexity of our medical system also contributes to medical errors, which harms patients directly of course, but also financially.2 

Increasingly in clinical research, there's a need to consider and test how to do as well or better with less treatment and tests if we are to avoid breaking a system that is already financially stressed by rising demands - the increasing age of the population that will lead to more cases of cancer. 

The Affordable Care Act can help to distribute the financial burden and risks by increasing the pool of patients who pay into the system - but insurance reform (including limiting the profits of the providers -- 80-20 rule) will not be enough.   The ACA includes programs to help to reduce costs (such as prevention coverage, and funding to explore new payment models) but ACA alone cannot address the primary forces that threaten access to quality healthcare.

The primary forces that threaten access to quality healthcare:

There's a need to address the affordability of new drugs1  - to find the right balance in patent law so that it retains incentives to innovate without limiting access to the patients the product was developed to help.  Patent law must serve the public interest. 

There's a need to address what has been called a perverse incentives (fee-for-service payment) to over-test and over-treatment; and to contain hospital care costs which is the leading driver of rising health care costs. 1 

There's a need to plan for increased demand due to the aging of the US population1  ... to find ways to provide more efficient high quality care (to do better with less).


Advocacy perspective: Ownership of Drugs Comes with Unique Responsibilities


Concerns requiring advocate attention (coming soon)


The cost of the drug based on efficacy.  The patient pays less if the drug is not effective for them.


Patent law / approvals: requires companies to provide drugs for NIH-funded comparative effectiveness testing.


  1. The ASCO Post: N. Newcomer, MD, MHA
    Innovative Payment Models Needed to Sustain Quality Cancer Care
  2. NEJM 2013: Full Disclosure — Out-of-Pocket Costs as Side Effects
  3. The ASCO Post: IOM report on looming crisis in cancer care and research
  4. PubMed - Medical Bankruptcy in the United States, 2007: Results of a National Study

    "62.1% of all bankruptcies in 2007 were medical; ... Most medical debtors were well educated, owned homes, and had middle-class occupations. Three quarters had health insurance. "
  5. NEJM: Perspective - The $640 Billion Question — Why Does Cost-Effective Care Diffuse So Slowly?

    by Victor R. Fuchs, Ph.D., and Arnold Milstein, M.D., M.P.H.
  6. NEJM: Health Care Spending — A Giant Slain or Sleeping? — NEJM
  7. NEJM:  Engineered in India — Patent Law 2.0 — NEJM

    A patent law that treats incremental innovation and significant innovation in the same way encourages companies to prioritize less important research over more important research. Provisions like Section 3(d) can help reverse this effect and encourage companies to undertake the riskier and more expensive research that is required to generate breakthrough drugs.
  8. AACR journal: Catch-22 for Cancer Tests
  9. Unsustainable prices of cancer drugs: from the perspective of a large group of CML experts - 
  10. Select Health Care Reform Background Articles

    compiled by PAL from evidence-based resources
  11. * ACS: The Cost of Cancer Treatment
  12. * Patient and Plan Characteristics Affecting Abandonment of Oral Oncolytic Prescriptions 

    10% of patients abandoned their anticancer medicine, and another quarter had some delay in initiating another oncolytic.
    Pharmacy plan design (cost-sharing amount) and complexity of patients’ drug therapy (prescription activity) are significant drivers of abandonment of oral oncolytic agents. 
  13. NEJM:
    Drug Companies' Patient-Assistance Programs — Helping Patients or Profits? —
  14. Dr. Saltz: The Value of Considering Cost, and the Cost of Not Considering Value

Disclaimer:  The information on is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns, you should always consult your doctor. 
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