by George Taniwaki

Once you and your kidney matchmaker have mailed letters to all of your friends, relatives, and others on your mailing list, consider broadcasting your message to an expanding circle to include coworkers, church members, neighbors, and others in your social network who you don’t know as well. One or more of them may be willing to begin the donor evaluation process. But until you tell them, they are unlikely to know of your need for a kidney donor. And if they don’t know, they won’t get tested.

One of the best way to reach these folks is a flyer (Fig 1) posted on a message board where they can see it.

FlyerSandra

Figure 1. Example of a half-page flyer. Courtesy of Sandra Driscoll

Design a flyer

A flyer can be almost any size from business card (2” x 3-1/2”) to poster (24” x 36” or more). For convenience, I recommend making it 8-1/2” x 11” (or A4 size in Europe) with vertical (portrait) orientation. A good flyer is like an advertisement. It must catch a person’s attention and make them want to stop and read it. Like an advertisement it should have the contain the following elements:

  1. Headline
  2. Photograph or illustration
  3. Message to potential donors
  4. Your contact information
  5. Logo (optional)
  6. QR code (optional)
  7. Tear-off tabs (optional)
  8. Calling card holder (optional)

Tips for creating a flyer are available at the Living Kidney Donor Search (LKDS) website

Items 1 through 5 (Headline to Logo)

Advice for creating a headline, photograph or illustration, message to potential donors, your contact information, and logo are provided in a separate Nov 2013 blog post.

The advice in that blog post was specifically targeted toward the design of a calling card, which is generally much smaller than a flyer. Just because a flyer has more space available doesn’t mean you need to fill it all with text. Having abundant white space makes the flyer attractive and can guide the eye to the important information. Use the extra space to make the headline bigger, make the picture bigger, and add more white space around your message to potential donors. Resist the temptation to add more text and make your story more detailed. Instead keep it the same as your calling card. Or, if you do add more text, do it to make your story more persuasive in order to drive people to your website or take other action.

Add a QR code to your flyer

A QR code is a 2-dimensional bar code (Fig 2). Anyone who owns a smartphone with a built-in camera and a bar code reading app can scan the bar code and be directed to a website with more information.

If you have a personal website or Facebook page with information about your need for a kidney donor, you should add a QR code to your flyer. You can do this by going to http://delivr.com/. This free service will create a bar code for you. Further, every time someone scans your bar code, it will track it and provide you with statistics about the users.

For instance, I created an account on delivr.com. I created a new campaign and entered the address for my patient guide, https://realnumeracy.wordpress.com/kidney-patient-guide/. The delivr.com service creates a custom link for me delivr.com/2tpt6 and generates the QR code that I can include anywhere (Fig 2).

FlyerQRcode

Figure 2. QR code that directs readers to delivr.com/2tpt6 and redirects to realnumeracy.wordpress.com/kidney-patient-guide

An example of a flyer with a QR code is shown below (Fig 3). One suggestion to improve this flyer. I would include the web address in the flyer. That way, people without a smartphone can still visit the website by writing down the address and visiting it once they get home.

FlyerTarra

Figure 3. Example of a flyer with QR code. Image from Shining Strong for Tarra

Add tear-off tabs to your flyer

To engage people who don’t have a smartphone, you can add tear-off tabs to the bottom of your flyer. The tear-off tab should include your phone number and website address (Fig 4). A little trick to make people more likely to tear off one of the tabs is to tear the first one off yourself before posting the flyer.

Also remember to include all the contact information in the body of the flyer so that people can copy it down in case all the tabs are taken.

FlyerEric

Figure 4. Example of a flyer with tear-off tabs. Image from KidneyQuest.com

Add a calling card holder to your flyer

Even better than tear-off tabs is folding the bottom of the flyer to create a pocket to hold your calling cards (Fig 5). Encourage people to take one. Again, remember to include all the contact information in the body of the flyer so that people can copy it down in case all the calling cards are taken.

FlyerCallingCardHolder

Figure 5. Example of a flyer with calling card holder

Printing and distributing your flyers

The least expensive way to print your flyers is to use a home inkjet printer. If you don’t have one, you may be able to have your matchmaker or another friend print them for you. Otherwise, you can have them printed at a local print shop. For great tips on choosing paper and printing flyers check out the LKDS website.

Places that often have a bulletin board where you can post your flyer include:

  1. The print shop where you bought your flyer
  2. Grocery stores
  3. Your workplace or union hall and those of all your friends and family members
  4. Local shopping malls/strip malls
  5. Churches

Remember to get permission from the owner of the bulletin board before posting your flyer.

To make it easy for your friends and family to print their own flyers, make sure a copy of it is posted on your website.

For more ideas on finding a donor, see my Kidney patient guide.

by George Taniwaki

If you are a kidney patient seeking a living donor, you need to start what Harvey Mysel of the Living Kidney Donors Network (LKDN) calls a Kidney Kampaign. A search for a donor is all about numbers. You want as many people as possible to know about your need for a kidney transplant. Whenever you meet someone, tell them about your condition and your story. Then, at the end of any conversation, remember to give them calling cards printed with pertinent information (Fig 1).

Giving people your calling card serves two purposes. First, it will remind them later of who you are and how to contact the transplant center. Second, even if the people who you give the card to do not personally decide to get tested, they may remember your story and speak to 3, 4, or maybe even 20 other people about their meeting with you. One of these people may step up and get tested. This is how social networking can help you reach a vast audience and can help you find a living donor.

HarveyCardFrontHarveyCardBack

Figure 1. Example of a kidney kampaign calling card. This is the card used by Harvey Mysel, the founder of Living Kidney Donors Network when he discovered he needed a transplant in 2012

Give away your calling cards

You and your matchmaker (topic of a future blog post) should give away your calling cards freely. Hand them out to all your friends, family, and acquaintances, even to strangers. And don’t just give them one card. Offer several and ask the recipients to help spread your story and to give away the cards to others.

Calling cards are useful beyond face-to-face encounters. When you and your matchmaker send cards and letters (see Nov 2011 blog post), remember to include several calling cards in the envelope.

When you post a notice on a message board (topic of a future blog post), remember to include a pocket to hold a stack of calling cards.

When you and your matchmaker host an event (topic of a future blog post), remember to hand out calling cards to all the participants.

Design a calling card

A calling card is different from a business card. A business card just presents the facts, your name, company, and contact information. A Kidney Kampaign calling card provides contact information, but it must also provide a compelling story to get the person receiving it to take some action.

There are three very good sets of instructions on creating a calling cards to find a kidney donor. The first is by the Living Kidney Donors Network. The other two resources are provided by Living Kidney Donor Search and the Living Kidney Donor Search tools and tips. You should read the excellent advice given on all three websites.

A basic business card is 2” x 3-1/2”, printed one-side, horizontal (landscape) orientation, in black and white (Fig 2). But to make your card stand out, consider the following options:

  1. Vertical (portrait) orientation
  2. Four-color printing, especially good for photographs
  3. Printed two-sides, also called duplex printing, almost required to fit all the information needed
  4. Reverse type, that is, white lettering on a dark background (should be limited to large bold text, like the headline)
  5. Picture or graphic that runs off the edge of the card, also called a bleed
  6. Folded card, shaped like a tent, helpful if you have a longer story to tell and will also make you card stand out from other cards

CallingCard

Figure 2. Examples of the options described above

A kidney donor calling card is quite different from a business card. A business card is passive and just provides basic information for the recipient of the card to contact you. Your calling card is more like an advertisement. Like an advertisement, it should contain the following five items:

  1. Headline
  2. Photograph or illustration
  3. Message to potential donors
  4. Your contact information
  5. Logo (optional)

Each of these items is described in detail below. When designing your business card, start with pencil and paper and rough out the design before going to the computer to create the final design that will be printed.

Headline

The first two things a person will see on your calling card are the headline and the photograph. If you don’t have a photograph on your card, then you will definitely need a headline. The headline should be direct and no more than one sentence long. Some ideas are:

  1. Help me fight chronic kidney disease
  2. Help me find a kidney donor
  3. Become a living kidney donor
  4. You can give the gift of life
  5. Save a life, start with a simple test

Photograph or illustration

A large photograph or illustration is optional, but it is highly recommended that you include one. A picture will draw the attention of any person who looks at your calling card for the first time. To be effective at creating a positive connection, the photograph must be of high quality. Don’t skimp. Don’t try to take the picture yourself. Ask your matchmaker or a camera-savvy friend for help.

To make the best first impression, the picture should be of high technical quality. You often cannot fix a bad picture using a photo editing tool like Photoshop. Instead, start with a good shot. This means the picture should be:

  1. In focus (to avoid fuzzy image)
  2. Taken with a tripod or steady hand (to avoid shaky or blurred image)
  3. Well lit (to avoid grainy background or red-eye)
  4. Taken in daylight (to avoid blue fluorescent cast or orange tungsten cast)
  5. Taken with the background chosen with care and cropped to eliminate extraneous items in the background

Some recommended subjects that will make the photograph compelling are listed below.

  1. A close up of you smiling (a natural smile, not a forced one)
  2. You with other members of your family who cannot be donors (you will need to explain why they cannot be donors in the text of the calling card)
  3. You with pets
  4. You with props that show you participating in a favorite hobby or family activity

Message to potential donors

Your message to potential donors should include an appeal that explains why you want them to donate. It should also include instructions on how to get started as a donor. The message has to be short. You can only fit about 100 words on the front and back of a standard business card.

An oversized card can have more words, but I actually recommend having fewer words on the card and instead include a link to your website for people who want more details. Some ideas on what to include are:

  1. A short biography and explanation of why you need a kidney transplant
  2. How your family is affected by your condition
  3. Medical benefits to you of living donor transplant (compared to lifestyle when undergoing dialysis therapy)
  4. Who can donate, must be between XX to XX in age (ask transplant center for its range), no uncontrolled hypertension, diabetes, or kidney disease, overall good health
  5. How to learn more about the costs and risks of becoming a living donor (link to website for details)
  6. Call for volunteers to get a simple blood test to start the process
  7. Contact info for the living donor transplant coordinator, or the independent living donor advocate, depending on the process at your transplant hospital
  8. Encourage them to spread the word about your need to others

with you the latest Be sure to inform the transplant coordinator and independent living donor advocate of your plans to publicize your donor search.

An example of a biography is shown below:

Hello, my name is John Smith. I have kidney disease and I’m in need of a kidney transplant. The wait for a deceased donor kidney can be more than 5 years. To avoid this wait, I am actively pursuing a living kidney transplant. A kidney from a living donor lasts about twice as long as one from a deceased donor.

Kidney donors need to be healthy, no high blood pressure or diabetic. A blood test will determine whether additional tests will be done to see if you are a suitable donor. To schedule a test contact Janet Jones, my transplant coordinator at the New York Transplant Hospital: jjones@nyth.com or 212-456-7890.

To learn more about the living donation process you can contact me (jsmith@gmail.com or 212-123-4567), visit the LKDN website (www.lkdn.org), or contact my transplant coordinator.

Your contact information

The following information should be included on the front of your calling card:

  1. Name
  2. Phone number (optional, but recommended)
  3. Email address
  4. Web address of your donor search website or Facebook page

Logo

If you are promoting organ donation in general. you may want to include the Donate Life America logo. Similarly, if you are promoting the Living Kidney Donors Network program, you may want to include the LKDN logo.

Where to buy calling cards

There are hundreds of choices for getting your calling cards printed. Any small print shop should be capable of showing you paper, ink, and other options for a professional looking card. If you prefer buying on the web, LKDN has created a portfolio of calling cards on the FedEx Office website (formerly Kinko’s).  To use the portfolio and purchase cards from FedEx Office:

  1. In a web browser, navigate to http://www.fedex.com/us/office/designprint/index.html
  2. Click My Account (on left)
  3. Type E-mail = info@LKDN.org and Password = businesscard and click Sign In
  4. Click View My Portfolio (in Design Center box)

A box of 250 business cards in color, printed two-sided will cost about $50 plus tax and shipping. If you need help, call FedEx Office customer service 1-888-889-7121.

If you want to design your cards from scratch and save money too, Living Kidney Donor Search (LKDS) recommends using Zazzle. The site guides you through the design steps. A pack of 100 cards printed 2-sided will cost about $25. To save even more, LKDS says discount codes for Zazzle are often available on RetailMeNot.

Another popular source for business cards is CafePress. They have a large number of designs available. However, they don’t support 2-sided printing or custom color printing.

More examples

Three more examples of kidney donor search calling cards are shown below.

CallingCardMandyFrontCallingCardMandyBack

Figure 3. Kidney Kampaign calling card for Amando Melgar, III. From LKDN portfolio on FedEx Office website

CallingCardTentFoldCallingCardTentFold2

Figure 4 and 5. Examples of covers for tent fold cards based on a t-shirt design sold by Zazzle (left) and a poster sold by CafePress (right). Designs are copyrighted

Thanks to Harvey Mysel of Living Kidney Donors Network for providing me with example cards that I use in my patient counseling. Additional thanks to Suzanne Kloss of Living Kidney Donor Search for providing additional tips on designing and using calling cards.

For more ideas on finding a donor, see my Kidney patient guide.

by George Taniwaki

You would think that something as basic as the periodic table wouldn’t make the news. But recently two articles caught my attention. The Jun 2013 issue of Sci Amer (subscription required) points out that with the discovery of element 117 in 2010 (elements 1 through 116 and 118 had already been discovered), the periodic table has no gaps in it for the first time since it was first proposed in the 1860s. I found that pretty surprising. Of course, future discoveries of elements with higher atomic number may create new holes.

The article says that over 1,000 versions of the periodic table have been published. The arrangement that is most familiar was developed by Horace Groves Deming in 1923. An example table is shown below. It is color coded to indicate the date of discovery of each element. Note that four elements, shown in purple don’t have names yet.

PeriodicTable

Figure 1. Periodic table of elements showing era of discovery. Image courtesy of Wikipedia

The Deming chart starts with hydrogen (H) on the top left and helium (He) on the top right. The number of elements in each row tends to increase culminating in a separate block at the bottom for elements that start with lanthanum (La) and actinium (Ac). The elements in each column have similar chemical characteristics. For instance, the elements in the last column in each row are known as noble gases since they have high ionization energy potentials (the energy required to remove one electron). This makes it difficult, though not impossible, to make them react with other elements to form compounds.

IonizationEnergy

Figure 2. Ionization energy to remove one electron from each element. Image courtesy of Wikipedia

Another way to lay out the elements in a table is to group them by their quantum electron structure rather than by their chemical behavior. One example is the Janet left-step table. It was developed by the chemist Charles Janet in 1928. It moves helium to the column next to hydrogen and moves the first two columns to the end of the table. Each element falls into a block. The lanthanum and actinium row of elements are given their place in the main table, rather than having to sit at the children’s table.

PeriodicTableJanetLeftStep

Figure 3. Janet left-step periodic table of elements. Image by George Taniwaki

Electron quantum numbers

Each row in the Janet left-step table indicates increasing electron energy level. This is represented by the integer n, called the principal quantum number. The first eight levels are named K, L, M, N, O, P, Q, and R respectively.

The number of blocks in each row is represented by the integer , which must have a value of < ((n+1)/2 ) and is called the azimuthal quantum number. The first five blocks are named s, p, d, f, and g respectively.

My version of the Janet left-step table above color codes each element to show which block new electrons are added, f (green), d (blue), p (yellow). and s (red). Note that there are exceptions to the block ordering. (An explanation is beyond the scope of this blog post.)

The number of orbitals in each new block is larger than the block to the right of it. Specifically, each block contains m pairs of cells = (2 * –1) cells, where m is an integer called the magnetic quantum number. You can predict that the g block in the next row of the periodic table will contain 9 pairs (18 total) cells.

Besides n,  ℓ, and m, electrons have a fourth quantum property called spin which is represented by s, an integer that can have a value of either +1 or –1. No two electrons in an atom can have the same 4 quantum values.

The images below show the orbitals for a single electron in a hydrogen atom as energy increases. Note there is a single s orbital, 3 p orbitals, 5 d orbitals, and 7 f orbitals. Each orbital can hold two electrons with spin +1 and -1, which explains why the s, p, d, and f blocks hold 2, 6, 10, and 14 electrons respectively.

Single_electron_orbitals

Figure 4. Single electron orbitals. Image courtesy of Wikimedia Commons

Order in which electron orbitals fill

Each electron orbital has a different energy level. Orbitals with larger primary quantum number and larger azimuthal quantum number have higher energy than those with lower values. Electrons tend to fill the orbitals in what is called the Madelung rule which states that on average, orbitals with higher value of n + have higher energy. For orbitals with the same value of n +, those with higher value of n have higher energy. Thus, the order in which orbitals fill is a diagonal array as shown in the table below. This describes the layout of the elements in the Janet left-step table.

ℓ=1
s
ℓ=2
p
ℓ=3
d
ℓ=4
f
ℓ=5
g
n=1
K
1
1s
n=2
L
2
2s
3
2p
n=3
M
4
3s
5
3p
7
3d
n=4
N
6
4s
8
4p
10
4d
13
4f
n=5
O
9
5s
11
5p
14
5d
17
5f
n=6
P
12
6s
15
6p
18
6d
n=7
Q
16
7s
19
7p
n=8
R
20
8s

A pretty periodic table

In other periodic table news, the Aug 2013 issue of Pop Sci features a periodic table drawn by Alison Haigh, a London-based graphic designer. The article calls it beautiful and easy-to-read. I agree that it is beautiful. I don’t agree that it is easy-to-read or useful.

PeriodicTableAlisonHaigh

Figure 5. Periodic table without text. Image courtesy of Alison Haigh

First, showing both the cells and the dots is redundant. Just showing one or the other would be sufficient to convey the meaning. That’s because a periodic table is laid out in atomic number order. Thus, to find the atomic number of an element you can just count the number of cells from the top left or count the number of dots in the selected cell. To find which orbitals are filled for an element, you can see which row and column the element is in, or you can inspect the dot pattern in the selected cell.

The dots in each cell are arranged in an unusual order. They are grouped in concentric circles in order of their principal quantum number. The innermost circle has 2 dots, followed by rings containing 8, 18, 32, 32, 18, and 2 dots respectively. This means the dots are not arranged in the order that the electron orbitals are filled. This is a bit confusing.

Further, this arrangement only allows for up to 112 electrons, which corresponds to the element copernicium (Cn). The outer rings do not have room for additional dots to represent electrons for heavier elements that have already been discovered or predicted by quantum theory.

Finally, one of the most important uses of the periodic table is to help recall the names, abbreviations, and atomic number of the elements. There are no labels in this table. And counting the dots, or counting the number of cells to figure out the atomic number is tedious.

A modified version of Ms. Haigh’s periodic table is shown below. The elements are laid out in a spiral that follows the Janet left-step periodic table. Cells are color coded to highlight the s, p, d, and f blocks. Each cell is labeled with the atomic number and abbreviation of the element. It’s pretty, I guess; it looks like one of those eye tests for color blindness. But the layout is still not as useful as a standard periodic table.

PeriodicTableHaigh2

Figure 6. Periodic table based on Alison Haigh design. Image by George Taniwaki

****

In 8th grade science class we were required to memorize the names of all the elements and their symbols. Do teachers make their students do that today? It seems rather pointless. How often do you use ruthenium (Rh)? There were only 98 named elements back when I was in school, so memorization was easier than it would be today where there are 114 and counting. Incidentally, based on that statement, can you can guess how old I am?

by George Taniwaki

In a May 2013 post, I described how to generate publicity for your living donor search by getting a local media outlet to provide news coverage. Not every patient will be able to get the editor or producer to do a news story.  If this is your situation, another way to get your message in front of people is to write a letter to the editor of the newspaper.

Letter-to-the-editor

The letter can be similar to the one described in a Nov 2011 post on sending letters to friends. It should contain the following information:

  1. Introduction of patient and matchmaker and why you are sending this letter
  2. Short medical history explaining why patient needs a kidney
  3. Explanation why matchmaker cannot be donor
  4. Request for potential donors to get a blood test (mention that you are especially hopeful of finding a type O donor if patient is type O)
  5. Contact info for the living donor transplant coordinator at the transplant hospital where surgery will take place (or the living donor advocate, depending on the process at the transplant hospital).

An example letter is reproduced below. It appeared in the Parkersburg (WV) News and Sentinel May 2013.

I am writing this to get the word out about living kidney donation, possible donors. I am writing this for my husband of 22 years. My husband is very special to me. He has been with me through thick and thin, hard times and happy times. He was a truck driver for 12 years.

He always said he felt like the king of the road when he was in his truck, he truly loved his job. He recently had to give up driving trucks because of a kidney disease. He had this problem for a long time, but his kidney problem steadily declined, making him have to give up driving trucks and be on dialysis. He goes to dialysis three times a week. He seems to be doing OK with the treatments; he tolerates it fine.

He is in need of a kidney transplant. We recently went to Ohio State University to be evaluated for transplantation listing on the national waiting list. His doctors said that he is a good candidate for transplant. The average waiting time for a deceased kidney donor is three to five years.

His best chance to get a kidney sooner is from a living donor. I would like to share some information about this. Kidney donors do not have to be immediate family. They can be anyone. For some people a transplant from a living donor may be their only option. Donors and recipients do not have to be from the same area. There are funds available for travel expenses and lodging. Donors return to a normal life with no fluid restrictions, diet restrictions or physical restrictions. Recipient’s insurance covers donors evaluation, surgery, follow-up care. Your health and life insurance won’t be affected if you donate to someone. For more info about becoming a living donor please contact a living donor coordinator (614) 293-6724 or 1-800-293-8965, option 4.

Let’s pray that someone out there might read this letter and decide to be a living donor. Thats why I wanted to put this letter out for all to read. I hope this will be able to reach many, many people. I need your help in this matter for anyone who has a loved one on dialysis and is in need of a kidney transplant. You might save someone’s life by being a living donor.

Christine Cullum

Parkersburg

For more ideas on finding a donor, see my Kidney patient guide.

by George Taniwaki

Modern medical therapies often include the use of drugs, many of which have strange-sounding names. I noticed that various drugs used by kidney transplant patents have similar sounding names like tacrolimus and sirolimus or daclizumab and basiliximab. All four drugs are used to reduce the incidence and severity of acute organ rejection. Just from the sound/spelling of their names, I assumed the first two were similar to each other, the last two are similar to each other and that each pair is different from the other.

Similarly, if you read articles about advances in healthcare, you will often come across the name of a new drug. For instance, I recently saw a Reuters article mentioning ichorcumab, an experimental anticoagulant that may start clinical trials soon. The name of this drug ends in -mab. I wondered if it was related to the kidney transplant drugs I was familiar with and how.

Generic drug names

These sometimes difficult to pronounce words are called generic drug names. Unlike the names of simple chemical compounds like titanium dioxide (TiO2), drug names do not describe the arrangement of atoms in the molecule. Instead, they describe the pharmaceutical origins or uses of the molecules.

There is a single organization called the United States Adopted Names Council (USAN) that reviews and approves all generic drug names used in the U.S. The USAN includes representatives from the American Medical Association (AMA), the United States Pharmacopeial Convention (USP), and the American Pharmacists Association (APhA). A liaison from the U.S. Food and Drug Administration (FDA) also participates.

Whenever a pharmaceutical company develops a new biologic agent, it submits an application to the USAN for a generic name for it. The company can suggest a name. The USAN will approve it, or if it rejects it, will suggest an alternative. The process usually moves quite smoothly, though on occasion there is a disagreement that can lead to a court case (C&EN Jan 2012).

Separately, the company that has developed the drug is free to create a brand name for it and register the brand name as a trademark. This is a completely different process. There need not be any connection between the generic name and the brand name. In fact, the FDA will reject any brand names that are too close to the generic name. An article with some details appeared in the J. Am. Pharm Assoc. 2004.

The USAN works with the International Nonproprietary Name (INN) program of the World Health Organization (WHO) to ensure that generic drug names are standardized worldwide. About 60 percent of all new drugs are developed by U.S. pharmaceutical companies, so the USAN heavily influences the INN program.

Specific naming rules

The USAN follows specific nomenclature rules. The USAN’s guidelines for naming new drugs are available here. Summarizing them, a new generic drug name should be:

  1. Unique – reducing confusion and enhancing safety when prescribing
  2. Nonproprietary – can be referred to without violating intellectual property rights or being specific to the product of a single company or source
  3. Informative – Useful for healthcare practitioners and medical education
  4. Short and easy to pronounce – can be used worldwide, a single word with preferably no more than 4 syllables with up to one modifier, also with no more than 4 syllables

Names are based on prefixes and stems. Prefixes are the unique identifiers for a drug. The stems are letter sequences common to a group of drugs that share pharmacologic actions. A complete list of rules for creating new prefixes and stems is available here. Some general naming rules are listed in the table below.

Rule Reason
Do not begin with rac, dex. lev-, ar-, and es These are reserved for racemic mixture, dextro- [R(+)] or levo- [S(-)] rotating enantiomers, and for R(-) and S(+) isomers of the levorotatory and dextrorotatory forms respectively
Do not begin with h, j, k, or w These letters either do not exist in some of the 130 countries that use USANs, or have different sounds in various languages
Do not begin with x or z X and z often sound alike at the start of words
Do not use ph, th, ae, oe, or y Different sounds in different languages, use f, t, e, and i instead
Avoid prefixes and stems like brev, vel, mal, or mor These stems imply other things (brevity, velocity, bad, or death, respectively)
Avoid stem name based on a drug or agent’s target indication Indications often change; mechanism of action is a better basis for names

There are hundreds of approved stem names under the USAN and new ones are added regularly. A complete list is provided here. A few common stems and their meanings are shown in the table below.

Stem Meaning
-anib angiogenesis inhibitors
-ase enzymes
-bufen non-steroidal anti-inflammatory agents, fenbufen derivative
-caine local anesthetics
-cept receptor molecules, native or modified (a preceding infix should designate the target)
-coxib selective cyclooxygenase-2 inhibitors
-erg ergot alkaloids
-imus immunosuppressives
subgroup: –rol-imus immunosuppressant, rapamycin derivatives
-kin interleukins
-mab monoclonal antibodies or fragments
-stat enzyme inhibitors
-tide peptides
-a-, -e-, -i-, -o-, -u-, -xi-, -zu- animal source, rat = a; hamster = e; primate = i; mouse = o; human = u; chimera (from proteins or genes of two different species) = xi; humanized = zu
-vir-,bac-, -li- or –lim-, les-, –cir-, tu target disease or condition: viral = vir; bacterial = bac; immunomodulator = li or lim; infectious lesion = les; cardiovascular or circulatory = cir; tumor = tu

To assist those unfamiliar with drug names, a guide to pronouncing generic drug names is available here.

Examples of generic names

Going back to our example of antirejection drugs prescribed to kidney transplant patients, one common drug is sold under the brand name Prograf by Astellas, a name that is intended to sound like it supports organ grafts. The generic name for this drug is tacrolimus. The prefix or unique identifier of the name is tac-. The stem –rol-imus means it is a rapamycin (a type of fungus) derivative immunosuppressant. This drug reduces the activity of T-cells and thus reduces the chance of acute rejection of the grafted kidney.

A similar drug is Rapamune sold by Pfizer and has the generic name sirolimus. As you may guess by looking at both its commercial name and generic name, it is also a rapamycin derivative immunosuppressant.

Another immunosuppressant drug often prescribed just prior and after surgery is  Zenapax, sold by Roche. The generic name is daclizumab. The identifier prefix is dac-. The stem –li-zu-mab indicates this is a humanized monoclonal antibody targeted at the immune system. Monoclonal antibodies are highly specific. Daclizumab will only bind with the CD25 receptors of T-cells. It does not suppress other T-cell activity and so does not increase the incidence of opportunistic infections like other immunosuppression medications.

A similarly prescribed drug is basiliximab, sold as Simulect by Novartis. The identifier prefix is basi-. The stem -li-xi-mab indicates this is a chimeral (meaning it made by combining bits from two different species, in this case mouse and human) monoclonal antibody. It also binds to the CD25 receptor of T-cells.

Some more examples are shown below.

DrugName

Drug naming convention. Image from C&EN

As a final case, let’s look at the new anticoagulant drug, ichorcumab mentioned earlier. The prefix is ichorc-. The stem –u-mab indicates this is a human derived monoclonal antibody. In Greek mythology, ichor is the golden ethereal fluid in the blood of the gods and other immortals. A nice description of the discovery of a patient who naturally produced the antigen that resulted in the development of ichorcumab is described in Fierce Biotech Jun 2013.

To learn more about drug naming conventions, there is an online app at Quizlet that includes flash card training, a scatter game, and a race game.

by George Taniwaki

As a kidney patient searching for a donor, it is best to start your search by contacting people you know as part of your social network. However, once you have contacted everyone you know, it may be helpful to expand your search to include strangers who live in your neighborhood.

One way to reach these people is to get a news story carried in a local newspaper, radio station, or television station. Getting your story in front of the public can help you and other kidney patients in the following ways:

  1. People you have already contacted previously may see or hear the story (especially if you send them a copy of it or a link to it). This will reinforce your message. It may provide the extra push they need to decide to get tested as a potential donor for you
  2. People you don’t know become aware of your story through the news. They decide to get tested as a potential  donor for you
  3. People you don’t know see the story and  decide to get tested as a donor for someone they know (not you) or decide to donate anonymously. Thus, although the story didn’t help you, it will help others

Contact your local media outlets

Newspapers, radio, and television can provide free news coverage for your story. These media outlets usually also have a web presence, including a standalone website and through social media like Facebook and Twitter.

Newspapers – Because there are so many, local community newspapers are the most likely media outlet to carry your story. If you don’t know what newspapers are available in your neighborhood, there are three good lists of local newspapers. I recommend searching all three in order to compile a comprehensive list for your area.

  1. U.S. Newspaper Links
  2. Online Newspapers
  3. Wikipedia list of newspapers in the United States

You may also try contacting the major daily newspaper(s) in you region, but your chances of getting a story published in one of them are much lower.

Radio – There are usually more radio stations than newspapers in a city. However, there are a few limitations in your ability to get your story publicized on radio. First, each radio station has a very constrained format. Most are music oriented or talks show oriented, often using nationally syndicated content. Most radio formats are not conducive for allotting time for local human interest feature news stories. Second, most people do not intently listen to the radio and are not likely to become actively engaged in your story. This means they are less likely to take action based on a story they hear on the radio than they would when reading it in a newspaper. Finally, unlike a newspaper, your story will only be heard if the person is listening to the radio at the time your story is aired.

If you decide to try promoting organ donation on the radio, the best list of radio stations in the US and Canada is Radio Locator. For radio stations outside these two countries, try Radio Station World.

Television – Occasionally, I see stories featuring a patient searching for a donor on the local TV news. However, I personally have not had any luck getting local station to carry a patient’s story. Instead, TV news stories are more likely to cover a successful transplant after the fact, especially one with unusual circumstances. Still, if you want to contact a TV news editor, a list is available at USNPL. Many local TV news organizations have a dedicated health editor.

Pitching the story

When describing a story idea to the news editor, you want to clearly explain why your situation will be of interest to the audience. Providing some of the following facts about kidney disease and kidney transplant will help sell the story.

  1. Kidney transplants are complex surgery, but frequently performed. Give name of hospital where you are listed as a transplant patient
  2. There are a lot of people in the community who are waiting for a transplant. Give number of people in your state waiting for a deceased donor kidney transplant (the data is available at http://optn.transplant.hrsa.gov/latestData/stateData.asp?type=state)
  3. These patients wait a long time for a transplant. The average wait time for a transplant from a deceased donor depends on location, blood type, and other factors. For patient in California with O blood type, the wait can be over 8 years. Many people die while waiting and never get a transplant
  4. There is a shortage of deceased donor kidneys. Finding a live donor helps reduce the shortage. It also leads to better medical outcomes for the patient

If you can tie your story in as part of a bigger story on a timely event such as World Kidney Day (March) or National Organ Donation Month (April), it may have a greater chance of getting covered.

If you are unsuccessful in getting an editor interested in running a story about your donor search, there is still another opportunity. You can submit a letter to the editor to be published in the newspaper. For details see this Jul 2013 post.

Preparing for an interview

Once your story is accepted, you will want to prepare to be interviewed by a reporter. You should be prepared to discuss the following details:

  1. How has kidney disease affected your life and your family. If you are on dialysis, describe your routine
  2. Explain why you are seeking a live donor, mention that any person who volunteers to donate a kidney may save a life
  3. Provide names and contact information for other people who the reporter may interview. (Remember to get permission first.) These may include:
    1. The living donor advocate at the hospital where you are listed. This person can talk about the donor evaluation process
    2. A previous transplant patient who can talk about the change in quality of life post-transplant
    3. A previous donor who can talk about the donation experience and quality of life post-donation

In addition to preparing your interview points, arrange with the newspaper to have them send a photographer to take your picture.

Some smaller publications may not have a reporter or photographer available to write a story. In this case, you will need to write it yourself, or find somebody who can write it for you. A college journalism student may be available to help you. Similarly, you will need to provide your own professional quality photograph.

Examples

A good example of a patient story appears in Queen Anne News and Magnolia News Mar 2013. The story features Sandra Driscoll, a retired attorney and a dialysis patient at Northwest Kidney Centers. A couple of screen shots are shown below.

QueenAnneNews1

Good example of a kidney donor search story. Newspaper flag and story screenshot from Queen Anne News and Magnolia News

Thanks to Sandra Driscoll for her diligent efforts and initiative in getting her story published and making her neighbors aware of the need for live donors.

For more ideas on finding a donor, see my Kidney patient guide.

by George Taniwaki

If you are a kidney patient or a kidney “matchmaker” (a friend or family member who contacts acquaintances on behalf of the patient) searching for a living donor, then hopefully you have already started on a Kidney Kampaign that includes letter writing, social media, and perhaps even a Craigslist ad. If you have already used these techniques in your search, then you may be ready to try something more complex. Today’s blog post covers the ins-and-outs of producing a video to publicize your search.

Producing a video isn’t for everyone. Creating and distributing a polished video requires you to have the skill (or more likely, access to one or more people who have the skills and are willing to volunteer the time) to script, narrate, film, appear in, edit, and post it. However, a video doesn’t need to be polished to be good as I’ll show later.

Adding a video with information about yourself and explaining how to become a living donor is an excellent way to reach your target audience of potential donors. I have reviewed several kidney patient videos posted on YouTube and have come up with a list of items that an effective videos should include:

    1. Introduction of patient and why the viewer should watch this video
    2. Short medical history explaining why patient needs a kidney
    3. Testimonials from friends or family members. Make sure the interviewer/narrator or the interviewees themselves make clear that these people are unable to donate. (This isn’t needed for children, most people will realize that a child cannot give consent to be a donor)
    4. Basic information about the donation process. Address common safety and cost concerns. Do not provide medical advice or donor acceptance criteria. Let the hospital do that
    5. Request for potential donors to get a blood test. (Mention that type O are especially desired, if patient is type O. But do not exclude anybody, again let the hospital do that.) Include contact info for the living donor transplant coordinator or the living donor advocate (usually a social worker) at the hospital where the transplant will take place

A good video can be short. Nearly all of the videos I saw on YouTube were less than 5 minutes long. Incidentally, the best way to promote your video is on YouTube. To do this, follow these steps:

  1. Create a Google account. If you have problems look under the Signing Up section of YouTube help
  2. Upload the video.  Get a final edit of the video on a computer with a high-speed Internet connection. Log into YouTube and from the Video Manager page, select the file to upload. Go to YouTube help for  encoding tips and a list of supported file formats. You will need to verify your account to upload HD videos longer than 15 minutes
  3. Apply metadata. This includes a title, description, category (probably “People & blogs”), search tags (like “need, search, find, kidney, transplant, donor, <your name>”), select a license (I recommend Creative Commons so that other patients will be able to copy it for use in their search), and select a privacy level (probably Public so that anyone can search and view the video)
  4. Get viewers. Copy the URL of the video and publicize it to all your family, friends, and social media contacts

A video produced by Sandra Driscoll, is an excellent example of the above. Sandra is a former city attorney for Seattle and a patient at Northwest Kidney Centers and at the University of Washington Medical Center. Her friends Peter Clarke and Connie McDougall acted as videographer/post-production editor and reporter/producer respectively. Two items that really caught my attention in this video were a photograph showing Sandra’s large extended family in which nobody was able to donate and the testimony from a young nephew about how Sandra’s life changed after she started dialysis.

SandraDriscollVideo

A professionally produced video seeking a kidney donor for Sandra Driscoll. It includes a narrator, interviews shot at multiple locations, and polished editing. Video still from YouTube

Some of the scenes in the video above were shot at an NKC facility. Sandra was careful to get permission before shooting on private property. You should too.

A good video does not require a slick professional appearance to be enjoyable, persuasive, and effective. For instance, three of Sandra’s nieces who are too young to donate themselves put together a heartfelt request for donors to help an aunt they deeply care about. Even though you can see that they are reading from cue cards, the viewer can see their sentiment is honest and it doesn’t detract from the message. (I think an audience may be less willing to accept adults reading from cue cards though.)

EllieDriscollVideo

A self-produced video of three nieces seeking a kidney donor for their aunt, Sandra Driscoll.  Video still from YouTube

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You may notice that I am the donor being interviewed in Sandra’s video. (I think it’s a good video despite my awkward performance.) Although I have several years of experience in advertising and marketing, I personally had never been filmed on camera before. A few things I learned:

  1. Always look at the interviewer. Do not look at the camera which will break the “fourth wall” and look unnatural
  2. Do not look up or dart your eyes, which many people, including me, do while thinking. This makes you appear evasive or dishonest
  3. When talking, avoid pauses that contain filler words such as “um” and “uh.” If necessary, rehearse your responses to avoid this
  4. You may be required to repeat your responses as the camera is moved from one position to another to get different angles. Again, it may help to rehearse your responses to keep them consistent from take to take
  5. Not withstanding all the effort needed to avoid the problems stated above, don’t be nervous. Relax and say what comes naturally. Stress in your voice will be apparent to the listener

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Incidentally, the best donor search video I found on YouTube was “Are You My Type?” It is a bit long at 14 minutes. The video was produced by Karol Franks on behalf of her daughter, Jenna. Karol is an administrator for the Living Donors Online website. This resource for patients, donors, and potential donors was mentioned in a Dec 2009 blog post. By coincidence, Jenna’s donor search page on Facebook was featured in a previous post on using social media to find a donor.

AreYouMyType

Video still from “Are You My Type?” Courtesy of  Karol Franks

Another nice video is one by David Goldman that features lyrics he wrote to match a tune composed by a friend.

DavidNeedsAKidney

Video still from “David Needs a Kidney” Courtesy of David Goldman

For more ideas on finding a donor, see my Kidney patient guide.

[Update: Added screenshots of the last two videos mentioned in this blog post.]