Angry Parents Use Social Media to Overpower Drug Company

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Today, I am going to keep going after drug companies.  I have worked with their representatives and know that they make valuable products but the leadership of these companies is putting profits and high prices ahead of the public interest.  

Pharmaceutical companies enjoy the image of being one of the most powerful interest groups in America.  They spend millions on campaign contributions, lavish gifts and consulting contracts on doctors and donate strategically to key non profit, disease-related organizations that represent patients who then join them in lobbying for greater access to their drugs.  None of this is illegal but it is had the impact of building political power that has thwarted grassroots support to push for  more responsible prices or for government negotiated drug prices in Medicare for example.

However, Mylan pharmaceuticals, which produces the epi-pen which is used to stem an acute allergic reaction, often in children, was blindsided by the power of parents and social media this month about their price increases for this product.  With no competition after the FDA refused to approve a competitor, they had raised the price to $600 for a pack of two and with high deductible insurance plans becoming more common, many parents were having to pay the whole cost.  Some members of Congress with children needing the product also became more vocal. Parents took to social media with online petitions and quickly put the company on the defensive so much that it immediately said it would offer a generic alternative at half the price.  That just makes you realize they could do that while still making a good profit.

The epi-pen story is a metaphor for everything wrong with the pharmaceutical industry. It should be possible in America to earn a good profit while also serving the public.  These companies have forgotten that.  They have been given almost free rein to charge whatever they want, whatever the market will bear, to literally price gouge the public with their greed.  Then, they use the excess profits to shower money on Congress, doctors and interest groups.  Drug companies like to make arguments for high prices, saying they need extra money for research and development costs, but basically they now just keep raising prices and try to force insurers and government programs to pay.  They claim that the patients won’t get hurt since they only have co-pays.   They offer patient assistance programs to cover those who can’t afford their products.

The parents who started the rebellion have shown us how to take on these companies.  Despite all their sophisticated political planning most drug company executives are tone deaf to understand how the public resents their greed.    Bad public relations is not good business.  Bad public relations spilling over into the political arena is not just a political problem.  Drug companies are continually having to reverse course when they realize their bad public relations is hurting their confidence with investors and driving down their stock prices.  They are their own worst enemies.

Using social media and people and consumer power is what we all need to keep doing to counterbalance the enormous power of the drug companies.  It is a grassroots remedy to counter their unwillingness to balance their profits and the public service their products provide.  The other is to question and vote against those candidates for office who refuse to hold these companies accountable.



“Unretirement” Comes into Focus in New Book

I am on vacation on Cape Cod this week so I am not keeping a regular schedule of blog writing.  Two years ago when I was in the Three Cousins bookstore here in Falmouth, Massachusetts I picked up The Boys in the Boat, the bestseller about the USA rowing team that won the 1936 Olympics in Berlin.  That book inspired me to write my own book, Keeper of the Olympic Flame, which I just published about Lake Placid Olympian Jack Shea who boycotted the 1936 Olympics because of the German discrimination against the Jewish population.

This week, I ran across another book in the bookstore I am buying called Unretirement by Chris Farrell.   It’s about how the Baby Boom generation is seeking to redefine retirement as many are looking for meaningful jobs to continue working on their terms.  Some even will be entrepreneurs starting new businesses they always wanted to.  Farrell basically talks about how the Baby Boom generation is not going to be what some once thought, so large it would drain the national treasury.  Rather, many will keep contributing by working and volunteering.

I am looking forward to reading the entire book and will be talking more about this in the next few weeks.  I have actually been in discussions which community groups are having about a workshop in the Albany area about Meaningful Retirement and discussing the options for continued work and voluntarism along with a good life balance with leisure, social and spiritual activities.  There will be more details on that to come as we hope to plan it for November.

Mike Burgess

Governor’s Office Engaging Advocates on Paid Family Leave Act Implementation

The Paid Family Leave Coalition is continuing to work on the implementation of the new law passed in this year’s budget which takes effect on January 1, 2018.  The coalition has had discussions with the Governor’s staff about issues related to the rollout of the program.  Some of these issues include outreach and notification of the public and working with employers to publicize it.  These discussions will include the language about the program that should be used by employers in any written employee benefit materials.  Also, there will need to be information materials explaining the differences between the TDI (Temporary Disability Insurance) program, the federal non-paid Family and Medical Leave Act and how the new program interacts with paid sick days and vacation time.

A number of state agencies including the Department of Health, the Department of Labor, the Department of Financial Services, the Workers’ Compensation Board and others are working on regulations for the program.  The regulations are expected to be issued this fall, perhaps as early as September, and will include a public comment period.  The agencies are also reviewing the best practices in the handful of states which have been operating paid family leave programs for several years.

The Governor’s office seems eager to publicize the program this fall with key groups which might be benefit.  In addition to labor unions, and child care groups, it is important for the aging and caregiver networks to be involved as outreach plans are developed.  Local offices for the aging should be involved in the outreach and publicity since all are responsible for family caregiver programs which they either run themselves or subcontract to other local nonprofits.  Hospitals and health providers need to be involved especially  with education that can be provided by discharge planners and hospital social workers.

The Paid Family Leave Coalition will look to take part in information sessions for aging and caregiver advocates, perhaps at existing fall meetings of these groups.    If your organization wants to take part, please contact me at since I am still serving on the steering committee for the coalition.

-Mike Burgess

NOTICE ACT Goes into Effect Regarding Medicare “Observation Status”


A new federal law HR 876 called the NOTICE Act went into effect on Saturday, August 6th, requiring all hospitals to give patients a notice within twenty four hours whether they have been admitted to the hospital or are in “observation status.”  This has been a years-long controversy as the number of observation status cases has skyrocketed because of financial penalties for unnecessary re-admissions as well as auditing fears that Medicare would retroactively deny payment for initial admissions.

A patient who has not been admitted for three nights in the hospital would have to pay out of pocket for any rehab in a skilled nursing facility for example.  If the patient is given notice, he or she can seek a change to admission status if they will be in the hospital for at least three nights.   If a patient is not admitted to a hospital, then Medicare Part B outpatient coverage is provided for insurance.  Part A of Medicare covers inpatient services.  A similar law has already been in effect in New York State.

Here are seven things to know about the NOTICE Act.

1. The legislation calls for hospitals to provide written notice to patients who are in the hospital under observation status for more than 24 hours. Hospitals would need to provide notification no later than 36 hours after the time observation status begins.

2. The written notice must include why the patient was not admitted to the hospital and the financial implications of observation status, including subsequent eligibility for coverage for a skilled nursing facility.

3. Medicare does not cover skilled nursing facility stays unless the patient was admitted as an inpatient for a minimum of three nights. In some cases, physicians reclassify people as inpatients when more than observation is needed. Medicare patients who are not reclassified have to either forgo SNF care or pay for it themselves, regardless of the length of their hospitalization.

4. Medicare Part A pays for inpatient stays. If you are hospitalized on observation status, payment by Medicare is under Part B, which covers physician and outpatient services. Patients without Part B coverage are often left with the bill for observation status, even though there was not a perceptible difference in the type or level of care they received in the hospital.

5. A number of states, including Connecticut, Maryland, New York, Pennsylvania and Virginia, already require hospitals to give patients notice about observation care.

6. There were an estimated 1.5 million observation stays among Medicare beneficiaries in 2012. The number of observation stays increased 100 percent from 2001 to 2009, likely because of financial pressure on hospitals to reduce potentially preventable readmissions of inpatients within 30 days.

7. Under the NOTICE Act, hospitals would be required to notify patients about observation status, but patients can only change that status by swaying a physician or the hospital to do so. Yale-New Haven (Conn.) Hospital CEO Marna Borgstrom noticed that after learning they were under observation care, many patients left the hospital against medical advice


A group of 40 consumer advocates held a press event outside the State Capitol last week urging Governor Cuomo to sign a bill that would create an appeals process for doctors who  believe that “step therapy” hurts their patient’s treatment.    Step therapy refers to the practice of health insurers who require patients to “fail first” on cheaper medications  or medications preferred by insurance plans before being able to use a drug that has been effective for them.   Governor Cuomo has not indicated a position on this bill though his Division of the Budget has supported these types of cost restraints.

The bill passed is S.3419C/A.2834D and was sponsored by Senator Catherine Young and Assemblyman Matthew Titone.  The bill has not been delivered to the Governor yet for his action so the ten day period for him to make a decision has not begun.

Surprise! Some New Medicare Beneficiaries Enrolled in Private Managed Care Plans Without Their Knowledge

Kaiser Health News reported this week that Medicare has given some Medicare Advantage plans permission to automatically enroll their health plan members into their Medicare managed care plan when they turn 65 – and that many beneficiaries are not aware this change has happened.  This “seamless conversion” allows companies to keep members of their plans they might have had with their employers or if they were in the company’s Medicaid plan.  The companies are required by Medicare to send a notice 60 days before the person joins Medicare.  However, some beneficiaries didn’t read or understand the letter or in some cases ignored it, thinking they were going to be enrolled in traditional fee for service Medicare when they turned 65.

This conversion can have serious consequences as one beneficiary learned because the Medicare Advantage plan had different terms and participating providers than her previous plan.  Kaiser reported her situation:

Only days after Judy Hanttula came home from the hospital after surgery last November, her doctor’s office called with bad news: Records showed that instead of traditional Medicare, she had a private Medicare Advantage plan, and her doctor and hospital were not in its network.Neither the plan nor Medicare now would cover her medical costs. She owed $16,622.

“I was panicking,” said Hanttula, who lived in Carlsbad, N.M., at the time. After more than five hours making phone calls, she learned that because she’d had individual coverage through Blue Cross Blue Shield when she became eligible for Medicare, the company automatically signed her up for its own Medicare Advantage plan after notifying her in a letter. Hanttula said she ignored all mail from insurers because she had chosen traditional Medicare.

This report is causing alarm bells with many beneficiaries and advocates who were unaware Medicare allows this and many other Medicare Advantage private companies are seeking permission for this “seamless conversion.”    Congresswoman Jan Schakowsky, an Illinois Democrat, is already considering legislation that would require beneficiaries to opt-in to this conversion rather than have to opt-out.

The Medicare Advantage plans have been arguing that this conversion allows persons to stay with their same company as they turn 65.  What they are not saying though is that the Medicare plan they offer is different than the plan the beneficiarey previously had and it can cost beneficiaries thousands if the providers they used are not part of the Medicare Advantage plan.