Skip to content
Letters to the Editor

Readers Have Their Say … On Pain And Who Stands To Gain In Drug Market

Letters to the Editor is a periodic KHN feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

Surgeons AWOL In The ER

While performing surgeries simultaneously is supposedly justified on the grounds of teaching residents and fellows, it wasn’t always this way (“Double-Booked: When Surgeons Operate On Two Patients At Once,” July 12). The surgeon was expected to stay and oversee and advise the resident as they worked. The real reason surgeons double- and triple-book in teaching hospitals — and the hospitals let them — is that it jacks their income into the stratosphere. That is one way teaching hospitals attract and keep some of the more talented (if somewhat avaricious) surgeons. I have been a hospital and medical group executive for over 40 years.  I know this is true.

— Richard V. Stenson, Forest Grove, Ore.

The Other Side Of The Opioid Crisis

Chronic migraines forced me to go on disability after 15 years of working as an RN in the NICU. I tried every medication suggested by my neurologist. The only medication that had any effect was gabapentin. Every day I read a new article about the abuse of an alternative to opioids, like gabapentin (“New On The Streets: Drug For Nerve Pain Boosts High For Opioid Abusers,” July 6). A new medication to vilify, restrict and cross off the list of alternatives to opioids. While I understand there is the potential of abuse for gabapentin, there is for all medications. In the efforts to fight the “opioid epidemic,” those of us who live with chronic pain have been ignored. Don’t be surprised if next time you break your leg, they give you an aspirin.

— Kristine Bell, Calgary, Alberta, Canada

Hammering Home The Message

There’s no better proof your recent video carries the drug lobby’s message than the PhRMA CEO’s two-word compliment: “Nailed It.” We take exception to the video (“Middlemen Who Save $$ On Medicines — But Maybe Not For You”), which we think confuses the roles of drug companies, wholesalers, drugstores, payors and pharmacy benefit managers (PBMs).

First, payors (employers, unions, government, health plans), not PBMs, decide what to do with the rebates that PBMs negotiate on their behalf. While PBMs are typically directed to pass through 90% of rebates, an increasing number of payors choose to have all rebates passed through. This is a transparent negotiation between PBMs and their clients. Likewise, it’s incorrect to say “consumers don’t see the savings” from rebates. Payors use rebates to reduce premiums, deductibles and copays for consumers.

Second, the video confuses the roles of PBMs, wholesalers and drugstores. Wholesalers and drugstores are the ones that buy and resell drugs. Whether those industries “pocket the difference” or include a “mark-up” is a question for them, not PBMs.

Third, the video confuses the role of drug companies (which set prices) and PBMs (which negotiate discounts off those prices). PBMs have no control over whether “prices for some drugs keep going up.”

It’s also a non sequitur to say PBMs favor competing drugs with higher rebates and discounts “instead of the cheaper drug.” By definition, the drug with the lowest net cost is the cheaper drug. In any case, 90% of the claims PBMs administer are generics, which involve no rebates at all.

Rising drug prices make coverage harder to afford for payors. Benefit design is not the cause but the effect. Payors try to cope by raising deductibles to continue offering coverage. It’s surprising that an established news organization would peddle such a misinformed video that so closely mirrors drugmaker talking points.

— Mark Merritt, Washington, D.C.
President and CEO of Pharmaceutical Care Management Association

Shaky Logic?

A recent KHN article (“5 Ways White House Can Use Its Muscle To Undercut Obamacare,” July 24) reports that various reputable entities suggest that Obamacare’s subsidized exchanges are “stabilizing.” But, a subsidy is money that bolsters that which is “unstable” by virtue of its being incapable of standing on its own. Are “Obamacare” exchanges requiring smaller and smaller subsidies, as time goes on, while delivering more and better coverage and care? Only then would “stabilizing” be an accurate description of their health and prospects.

— Larry Powers, Philadelphia

You Get What You Pay For

I am grateful for the attention Kaiser Health News brought to the extremely high sticker price of Spinraza. When assessing the cost of rare-disease drugs, one must look closely at the benefits the drug provides, and unfortunately the article (“Drug Puts A $750,000 Price Tag On Life,” Aug. 2) vastly undersold Spinraza’s benefits.

By any metric, Spinraza is a major breakthrough for spinal muscular atrophy (SMA) patients. In addition to the data you cited, over 70 percent of the infants saw a four-point or greater increase in The Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders score, another motor-skills gauge. And it cut the risk of death or permanent ventilation by 50%. Infants dosed before symptom onset show even more profound benefits, with many hitting motor milestones when expected and some even walking. The data also show Spinraza benefits patients on ventilators.

You state, “It was tested only on children, most under age 2, though it was approved for pediatric and adult use.” However, over half the patients in the pivotal trials were ages 2 to 12. The drug showed incredible benefit in these patients as well — a four-point difference in the Hammersmith motor function score compared to placebo. This a meaningful change in these kids’ lives. And because the drug worked in two different patient populations, it would be unethical to withhold it from older patients.

With respect to the cost to develop the drug, Ionis Pharmaceuticals, the developer of Spinraza, has spent over a billion dollars over 30 years developing the novel class of drugs Spinraza is a part of (antisense oligonucleotides). This is Ionis’ first commercial success. Implying development started in the early 2000s with public money does not tell the whole story. Without Ionis’ decades-long efforts, Spinraza would not exist.

— Nate Uhl, Greenwood, Ind.

[Editor’s note: The FDA provides this “drug trial snapshot” and summary review to detail who participated in the clinical trials that led to the approval of Spinraza and provide information about whether there were differences among sex, race and age groups.]

Benefits Vs. Risks

We would like to clarify a few points in “Denial, Appeal, Approval … An Adult’s Thorny Path to Spinraza Coverage” (Aug. 2). Kaiser Permanente is strongly committed to providing safe and effective care for our patients based on the patient’s clinical condition, physician expertise and evidence-based research. At this time, there is no published clinical evidence that nusinersen benefits adults with spinal muscular atrophy (SMA). While the Food and Drug Administration did approve nusinersen (Spinraza) for adults, the clinical trials tested nusinersen only in children up to age 15. This puts the responsibility of doing the research on the efficacy of nusinersen on health plans and delivery systems, while potentially exposing patients to side effects and harm.

Kaiser Permanente physicians have prescribed the drug for patients whose age and clinical condition indicate they are most likely to benefit from the treatment based on medical evidence. We encourage the FDA to re-examine its drug approval process to ensure that pharmaceutical companies have actually conducted research on the appropriate populations to prove their drugs are safe and effective.

— Dr. Sameer Awsare, Campbell, Calif.
Associate Executive Director, The Permanente Medical Group

[Editor’s note: Kaiser Health News is unaffiliated with Kaiser Permanente.]

Cutting To Heart Of The Data

Of course — if you demonize the cardiac surgeons with high death rates, then those surgeons will improve their rate by turning away patients who are likely to die (“Calif. Hits Nerve By Singling Out Cardiac Surgeons With Higher Patient Death Rates,” July 17). Those patients will die without surgery, but at least the reported numbers will improve! It happened in New York and will happen in California in proportion to how much demonization goes on.

— Dr. Bruce Bodner, Taunton, Mass.

What Readers Want: More Digging

When telling a story and someone says, “Obamacare was too expensive,” don’t stop there. You need to dig into why the person is saying that. We need to know whether:

  1. The person has income too low to be eligible for a tax credit to help pay for the plan and thus would have had to pay the full price.
  2. The person has income too high to be eligible for a tax credit to help pay for the plan and thus would have had to pay the full price.
  3. The person is eligible for a tax credit to help pay for the plan but they looked at bronze plans and decided the deductible was too high to be worth it. They weren’t aware they were eligible for a cost-sharing reduction with a silver plan.
  4. The person is eligible for a tax credit to help pay for the plan, looked at both bronze and silver plans, considered cost-sharing reduction if eligible and it still was more than they could afford.

These are different problems and we need to know which it was.

— Mary Schneckenburger, Litchfield, Maine

Poster Child For The New 90s

Your story “How To Put The ‘Non-Age’ in Nonagenarian” (June 26) is a big deal! When I was 97, I was writing plays and producing them. Since my 90s, I’ve been writing books and have published five books. I dance, but I have to hold onto my walker. I travel every year to somewhere warm … and my memory is excellent. I take each day as it comes and find enjoyment in simple pleasures. I enjoy a good laugh and good conversations — my daughter says I’m very funny and should do sit-down comedy! I find life very interesting — even at my age. (I am going to be 103 on my next birthday.)

— Estelle Craig, Toronto

Related Topics

Cost and Quality Health Industry Insurance Public Health The Health Law