Health Materials in Plain English

As a volunteer UNOS Ambassador, I was excited to participate in a focus group recently on using plain language in proposals about how lifesaving organs are allocated in this country. UNOS (the organization that manages the organ transplant waiting lists) was proposing changes to the current distribution system.

It was seeking public comment from people who could be affected by these changes, such as patients and their loved ones. I naturally jumped at the opportunity to combine my interest and skills as an editor (I’ve even taken workshops in plain language) and as a kidney donation advocate to advise the group on plain language–in other words, plain English.

Kudos to UNOS for creating the focus group. When an organization whose mission affects the lives of so many people (113,000 people in this country are on waiting lists for organs) considers an important change in policy, of course you want to be sure that people understand it well enough to offer valuable feedback.

I couldn’t help wondering, though, why plain language skills and training weren’t an integral part of that organization and others like it. When I was an editor at RTI International, a major nonprofit research institute based in North Carolina, we often worked on materials for federal agencies with just this goal in mind. That’s why I and many of my colleagues had had training in it.

Reviewing the documents on which UNOS was seeking public comment, I was painfully aware of how often health-related materials leave users/readers confused or overwhelmed—often both. Out of curiosity, I checked the reading level of much of the overview section, and it was 12.3—that’s a high school senior. Thousands of the patients on the wait lists, many of whom live in poverty, lack the education to understand this information. For example, replacing phrases like “equitable access to transplant” with “the way that kidneys are distributed needs to be fairer” would go a long way toward making it all clearer.

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“Health literacy” is about understanding basic health information well enough to be able to make appropriate decisions about your care and that of your loved ones. That means grasping test results, being able to follow prescription instructions, understanding your doctor’s explanations. Health care providers bear a lot of responsibility for making sure their patients understand these things, but agencies and organizations that create printed or online health materials also have a responsibility to make them easily understandable. (That’s why Betsy and I wanted to write a book on living kidney donation that’s nontechnical and uses plain English.)

Health literacy is not a question of language, although people whose native language isn’t English certainly can have a particularly difficult challenge. It’s not always a matter of life and death, but it certainly can be.

Certain health-related materials, such as informed consent for participating in procedures or studies, have legally required dense sections but should always include a simplified “What This Means to You.”

Next time you’re at your doctor’s office or pharmacy and you read or hear something you don’t understand, don’t be embarrassed about speaking up. If we don’t demand clear, easily digestible information—that is, in plain English without jargon or convoluted wording—the healthcare system will continue to offer overly complicated materials. The results can be tragic.

A Donation Advocate by Any Other Name

Funny how things take on a life of their own. Less than 3 years ago when I was interviewed at length on “Your Health” radio show and asked to tell my story about donating a kidney to my son in 2006, I was a bit uncomfortable with their description of me as an advocate for living organ donation. Yes, I was passionate about the subject, never passed up an opportunity to talk about it, and was writing a book on living kidney donation, with a live-donor-kidney recipient (Betsy Crais). I’d also written a couple of op-ed pieces, but “advocate” sounded much more significant (and certainly impressive) than whatever I was doing in my own little ways.

But then I ventured out a bit and spoke at a rotary club and a couple of patient workshops. I started writing blog posts sharing my story. I began to use Twitter and Facebook to talk more generally about the 30 million Americans with chronic kidney disease and the dire need for donors—live and dead. So when two local TV news stations interviewed Betsy and me last year about our book in progress and referred to us as advocates, that time the label felt right.

And now the National Kidney Foundation has made it official, inviting me to join its nearly 200 Kidney Advocacy Committee members nationwide. The NKF advocates can

bring the patient/family voice to NKF’s legislative priorities

serve on panels and in conferences hosted by various government agencies….

I am honored and deeply humbled to join the ranks of “donation advocates.” There’s work to be done.

Covering Anti-Rejection Meds Should Be a No-Brainer

Ever hear of the Immunosuppressive Drug Coverage for Kidney Transplant Patients Act? I didn’t think so, but we need to make sure that members of Congress hear about it.

You already may know that virtually all (yes, I know of one exception) kidney transplant patients, unless they got the new kidney from their identical twin, have to take anti-rejection meds for the rest of their lives. That’s so their body’s immune system doesn’t see the organ as a foreign body and pounce on it the way it’s designed to do.

You may also know that Medicare provides health coverage for patients of any age with kidney failure—ESRD, or end stage renal disease (a name, incidentally, that scared the hell out of me when we were first told that was my son’s condition). That’s a good thing, right? Of course, though, there are a few catches, like needing to accumulate enough work quarters or credits, as my son described in a post here recently.

But here’s the real, global problem. For some unfathomable reason, the coverage ends 36 months after the transplant.

That might make sense by some logic if most patients needed to take those anti-rejection meds for a maximum of 3 years. No way–see second paragraph of this post, which points out that virtually all patients have to take them “for the rest of their lives.”

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Now, you may be thinking, well, these drugs are probably available for a nominal charge given that these are life-and-death medications. Think again: they run into the thousands of dollars per month for direct pay. So, depending on what kind of health insurance you have—and if indeed you have any at all—you may very well not be able to afford them. You know what happens when people skip doses or stop taking these essential medications completely? Their bodies reject the transplanted kidney and they’re back on dialysis—or they die.

The campaign to push for extending immunosuppressive drug coverage is called “Honor the Gift”–that is, honor the gift of life by protecting that precious kidney–and it’s supported by virtually every major kidney and organ donation organization in the country. Clearly, it makes no sense either medically or morally to stop this life-sustaining drug coverage at an arbitrary point, when it’s so obviously still needed.

Medical and moral justifications should be reason enough, but there’s a strong economic one, too: in the long run, an organ transplant costs the federal government far less than years of dialysis for those patients. In fact, an analysis by ASPE, a federal agency within the US Department of Health and Human Services, concluded in May 2019 that extending the Medicare drug coverage beyond the 3 years “would result in ten-year accumulated savings of approximately $73 million.”

Bipartisan coalitions in both the House and the Senate have been poised to introduce legislation to extend the Medicare drug coverage. The bill has been introduced more than a dozen times in the past 15 years. Tell your senator and member of Congress that supporting this legislation is a no-brainer for families–like mine–struggling with a loved one’s kidney failure and for society in general.

Kidney Vouchers Are Even Cooler Than You Thought

My last post, “Kidney Swaps and Vouchers and Chains, Oh My!” got a very positive reaction. It was a real feel-good story about a living donor I know who made a new kidney possible for her son even though she couldn’t donate to him directly, thanks to a voucher system. Several people outside the kidney community were blown away by the idea of vouchers, which is part of the National Kidney Registry’s advanced donation program. Not surprising—it is pretty cool. I realized though that I hadn’t explained some of the amazing ramifications of a voucher system.

I’ve heard many living donors who’ve given to a friend or acquaintance–or even someone they didn’t know–report that their families were very upset with them. Can you imagine how shaken these donors were to encounter not just concern but sometimes outright anger as they contemplated the most selfless act of their lives? What if your mother or I need one? What if one of your kids ever needs a kidney (often asked of childless couples and unattached individuals)?

The donor’s answer usually was that they felt compelled to respond to someone’s very real need now and couldn’t refuse to help that person because of a what-if that might never occur. Many of these donors say they felt confident that an equally generous person would step up at such a time of need. One African American woman I was on a panel with recently said because live donation is still uncommon in the black community, her mother was particularly uncomfortable with the idea of her donating to someone she didn’t know. She stopped her mother’s protests once and for all, though, by asking simply, “If I were the one who needed a kidney and had no family donor, wouldn’t you want someone to come to my aid?”

The young man I wrote about in my last post was fortunate to get his live-donor kidney soon after he needed it, just a few months after his mother’s donation. Vouchers can be redeemed years, or even decades, after the donation if they’re not needed right then.

I remember reading about a healthy man in his 60s whose granddaughter had kidney disease and would probably need a kidney transplant in a few years. He feared that he might not be healthy enough to donate by then. With a voucher system, he was able to donate soon to improve the child’s chances of getting a live kidney if and when she needs it. There are no guarantees that a good match will be available at that point, of course, but having the voucher would definitely make her wait much shorter.

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So potential living donors who encounter their families’–or their own–troubling “what if” questions, actually have a practical response. NKR vouchers are increasing the number of people willing to donate a kidney—and saving more lives.

Kidney Swaps and Vouchers and Chains, Oh My!

I was delighted to hear from fellow WELD (Women Encouraging Living Donation) member, Michele Hughes, that her son Dan had just had a successful kidney transplant, at New York-Presbyterian/Weill Cornell Medical Center. Like me, Michele had wanted to donate her kidney to her 20-something son with kidney disease. In their case, though, it wasn’t possible. But this is 2019. So, a few months ago, Michele donated her kidney at Vidant Medical Center in Greenville, North Carolina, to a stranger on Dan’s behalf. In return, they received a prized voucher through the National Kidney Registry for a compatible kidney for her son.

A picture of WELD members wearing DONOR tee shirts and holding signs that say "Donate Life." The caption tells where Michele is standing.
Michele is in the front row, third from the left (not counting our littlest WELD member). That’s me, second from the right.

NKR has a huge living-donor pool in the United States; it tries to find the best match for a potential recipient so that if the intended donor isn’t a match for them, they can do a “swap” or even form a kidney chain.

Yes, these amazing options make everything so much easier than it used to be. But anyone whose loved one has had a life-threatening condition knows how stressful and overwhelming navigating the system can be. Fortunately, Michele’s family was closely supported by a knowledgeable friend who’s a living donor himself, Ned Brooks.  I recently heard Brooks’s fascinating TED talk, “What Makes a Person Decide to Donate His Kidney to a Stranger?

In 2015 Brooks, a retired businessman, decided to donate his “spare” kidney to a stranger to set off a chain of three transplants. Like many of us, he found the living-donation experience so uplifting and life changing that he was determined to spread the word. He went so far as to found a nonprofit, Donor to Donor, to publicize the kidney crisis and to encourage and facilitate living kidney donation. In addition to sharing valuable information and donation stories, the organization matches potential kidney recipients with previous kidney donors/advocates who volunteer to help them find a donor.

Congratulations to Michele and her son. Wishing Dan a smooth recovery.

Donor to Donor will sponsor a (free) one-day Volunteer Kidney Donor Advocates Conference April 24, 2020, in New York City. Details to come.