Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.
Precision Medicine: The Full Picture
Thank you for publishing Liz Szabo’s piece, “Much Touted For Cancer, ‘Precision Medicine’ Often Misses The Target” (Sept. 13). In calculating the pluses and minuses of precision medicine, please add attention to “side effects,” which can be more like full-frontal assaults. In my sweetheart’s four years of living with a terminal diagnosis, she had two experiences with precision medicine. The first probably extended her life, even though it brought a disabling side effect. The second sent her to the hospital with a pulmonary embolism and pneumonitis — it probably shortened her life. At best, 2 in 25 patients live five years with the diagnosis of metastatic lung cancer, instead of the estimated 1 in 25 about 10 years ago. Yes, it’s progress, but at great physical and emotional cost.
— Jack Hailey, Fair Oaks, Calif.
But cancer survivor @MarkstageIV exhorts others never to discount the hope that comes with treatment.
When DX. w/stageIV Metastatic Melanoma. 1st doc said "you're done" no cure no treatment , you have 6 months /2 years max. I went home that day to prepare to die. Thankfully I was referred to another Dr. This was 11 years ago! 9 plus NED. People need hope! Hope keeps us going.
— Mark Williams (@MarkstageIV) September 13, 2018
— Mark Williams, Portland, Ore.
By suggesting that positive characterizations of precision medicine’s potential “mislead the public,” Liz Szabo may undermine patients’ confidence in treatment approaches that save lives and inhibit future investment upon which improvement in cancer care depends.
While she is correct to note that precision medicine is not yet “addressing the needs of the majority of cancer patients,” she overlooks the considerable progress in the last two decades, when, beginning with Herceptin (trastuzumab) in 1998, targeted therapies began to redefine possible cancer treatment beyond surgery, chemotherapy and radiation.
Precision treatments targeting the “Philadelphia” genetic mutation in patients with chronic myeloid leukemia, for example, have more than doubled the overall five-year survival rate for patients with this disease over the past decade.
In total, the Food and Drug Administration has approved more than 40 precision medicines for the treatment of many types of cancer. On the labels of these drugs, the agency requires drugmakers to include information about their use in molecularly defined subsets of the patient population. This information underpins precision cancer care that is helping many — albeit not all — patients live longer and healthier lives.
— Edward Abrahams, president of Personalized Medicine Coalition, Washington, D.C.
Let’s not forget the unpleasant alternatives to “precision medicine,” says a California doctor:
How about the women who are spared of unnecessary chemo and its short & long term side effects? This article generalizes ‘precision medicine’ to targeted txs but completely overlooks tests like oncotypedx. Sometimes our own biases blind us to leveraging what good can be done.
— Ayse Tezcan 🐬 (@aztezcan) September 12, 2018
— Dr. Ayse Tezcan, San Diego
Poignant And Pressing
JoNel Aleccia’s story on physician-assisted death (“‘No One Is Ever Really Ready’: Seattle Aid-In-Dying Patient Chooses His Last Day,” Aug. 14) was wonderful and, for me, very timely. I live in a retirement community in Seattle and yesterday was present when a friend with ALS drank her cocktail and went peacefully to sleep, about as quickly as Mr. McQ did. My friend was 88, but the decision was no less hard than it was for Mr. McQ. What I applaud about the story was its sensitivity and forthrightness. This is a topic that needs public discussion and more awareness. Thank you!
— Amy Mann, Seattle
For @adrane, part of Aaron McQ’s legacy is inspiring others:
Haunting and important reminder of gift of choice: “I’m not wanting to die…I’m very much alive, yet I’m suffering. And I would rather have it not be a surprise": ‘No One Is Ever Really Ready': Aid-In-Dying Patient Chooses His Last Day https://t.co/XnhPlBBeds via @khnews
— Alexandra Drane (@adrane) August 14, 2018
— Alexandra Drane, Boston
Baby Steps On Step Therapy
Last week, Susan Jaffe reported that recent changes to Medicare Advantage plans would allow for implementation of step therapy policies for drugs delivered in doctors’ offices and other outpatient settings, starting in 2019 (“Medicare Advantage Tool To Lower Drug Prices Puts Crimp In Patients’ Choices,” Sept. 17). Interestingly, what people do not realize is that step therapy is not a new strategy for addressing rising drug prices. Step therapy is one of the most common type of coverage restrictions in the U.S. by commercial payers for specialty drugs. My current concern is that there might not be proper implementation procedures in place to protect vulnerable individuals, such as cancer patients, whose treatments may be delayed given the new policy. Legislation is needed to protect patients, because they should be the primary focus of our health care system.
Alternatively, why doesn’t the U.S. look abroad for other strategies to reduce drug prices? For example, value-based benchmarking has been used by other high-income countries such as the United Kingdom and the Netherlands. This strategy sets drug prices based on its health benefits. Ultimately, regardless of strategy, I believe that efforts to reduce drug prices should be based on strong evidence.
— Tatyana Roberts, Oakland, Calif.
Suddenly Evicted From Long-Term Care
Judith Graham’s “Navigating Aging” column on evictions was a great read (“Assisted Living Kicks Out The Frail ’Cause ‘We Can’t Take Care Of You Any Longer,’” Sept. 6). Still, I see some gaps and biases. In Washington state, as in many others, assisted living facilities are licensed based on a disclosure of services they can provide. For example, one facility might say we can help you if you need two people to assist you with transfers, while other facilities may be able to provide only one-person assistance. Most assisted living facilities meet or exceed the accommodations to which they have pledged, millions of times every day.
I am aware there are a few operators out there in the business to make money and to do so quickly. They never last and should never represent who are; the majority of us that have committed to serving those who have traveled many miles ahead of us.
Filling assisted living beds is costly and a daily daunting task. No facilities would want to discharge for no good reason. Assisted living facilities staff across the nation work very hard and go out of their way to serve those accepted into their care. We tend to bond and to love residents like our own families. Discharging them is always the last thing on our minds and a painful endeavor. Your article is consumer-biased, I think you need to dig deeper to fully grasp the full flavor of what comes into play when discharge decisions are made.
—Albert Munanga, DBH, MSN, RN, regional director of Quality Improvement Affiliate Faculty; University of Washington Department of Biobehavioral Nursing and Health Informatics, Seattle
On the other hand, @Rickyt4187 can relate to the narrative, as it happened to a relative, he said.
This literally just happened to my uncle now he is being moved to another facility that is going to be charging him 4600$ a month
— RICKY TINGLER (@Rickyt4187) September 8, 2018
— Ricky Tingler, Covington, Va.
Carrots — Or Quotas? — For Doctors To Take Medicaid Patients
Phil Galewitz recently reported that there may be a lack of awareness among foster kids and their caregivers that they are eligible for Medicaid up until the age of 26 (“Medicaid Covers Foster Kids, But Daunting Health Needs Still Slip Through The Cracks,” Aug. 24). As he noted, the other pressing issue is the lack of doctors taking Medicaid patients. As a master’s student at the University of California-Berkeley, I believe separating foster children in their own Medicaid health plan is a wonderful temporary approach but is not addressing the root cause of the issue. What about other vulnerable populations who are Medicaid recipients with pressing health needs that have not been met?
Doctors are not given incentives to accept more Medicaid patients, resulting in reduced quality of care and options for Medicaid patients. I propose that we discuss a model where more options are given to Medicaid recipients, allowing for higher copayments to be made by patients so that they can contribute to costs (a sliding scale based on income) and where doctors are incentivized and/or mandated by the government to accept a certain amount of Medicaid patients. For those who cannot afford copayments (such as foster kids), no copay is required.
— Cezanne Bianco, Berkeley, Calif.
Amid today’s high-voltage partisan bickering, @greg_fann finds the equanimity of a bipartisan issue:
There are legit reasons to argue against ACA Medicaid expansion. Hard to argue against govt assurance for foster families.
— Greg Fann (@greg_fann) August 25, 2018
— Greg Fann, Temecula, Calif.
@stinepetrin adopts the idea of a contagion of solutions:
“We would not be able to foster without Medicaid. It pays for everything.”
On my peds rotation I saw so many incredible foster families providing life-changing care for these kids. More states need policies that link these families to the care they need. https://t.co/lUC6SEPrfT
— Christine Petrin (@stinepetrin) August 27, 2018
— Christine Petrin, New Orleans
On Opioids And Suicides
The headline on the article “Suicide By Opioid: New Research Suggests Overdoses Should Be Classified As Self-Harm” (Aug. 27) is misleading, suggesting that classifying all opioid overdoses as suicide is somehow justified by research. The text couldn’t be clearer: The classification is actually an unjustified premise. The data are being manipulated in a way that blames, shames and criminalizes victims of opioids. Please attempt to avoid such bias in the future.
— Edith Agoff, Corvallis, Ore.
The headline did not sit well with @jaredrhoads, either:
Headline ("Suicide By Opioid: New Research Suggests Overdoses Should Be Classified As Self-Harm") more grandiose than researcher's actual comment ("By always separating drug deaths from suicide is to underestimate the mental health crisis.") https://t.co/4S94VqcNxU via @khnews
— Jared Rhoads (@jaredrhoads) August 28, 2018
— Jared Rhoads, Lebanon, N.H.
Rachel Bluth’s article on opioids and suicides brings important issues to light. Cause of death is not always readily determined. A designation of “opioid death” is the most sensitive way to handle a fatal drug overdose with the least amount of damage to survivors and loved ones. After that, we can discuss how or why “they did it.”
To call it either suicide or homicide highly limits the investigation of truth. Historically, it has been important to classify substances according to opioid or non-opioid (such as NSAIDs and other pain medications), but even so we are entering into arguments over cause. This article is very helpful in triggering the conversation. For example, a cardiac arrest death designation does not distinguish between a family history of cardiac arrest or a drug-induced cardiac arrest. As with all diagnoses, the diagnosis is but a starting point for discovery. Please have patience and use caution in laying blame.
Consider the disease Kaposi sarcoma and its historical presentation among the dead and diseased for a comparison: It was a rare condition that presented on the lower leg of old men from the time it was first identified as a designatable disease — until it became prevalent on the chests of patients with late-stage AIDS.
— Sheila Renee Runke, Phoenix
A doctor from Nebraska, @DrHowardLiu, gets the last word:
If one combines ##opioid overdose deaths with #suicide, it becomes the 7th leading cause of death. We must adequately fund a behavioral health system rather than simple solutions. @BartAndrews @JudgeWren @StuckonSW @bryanwempen @MDSantopietro @JCAllenMD @Joyous184 Via @KHNews https://t.co/fNDt5umZNP
— Howard Liu (@DrHowardLiu) August 28, 2018
— Dr. Howard Liu, Omaha, Neb.