In our last Newsletter (Spring '95), I reprinted an article from National PKU News in which the editor, Virginia Schuett, asked three companies making medical foods (formulas) to respond to questions about their products. The winter '95 issue of the National PKU News included an article in which Virginia asked the three U.S. companies making and distributing low protein foods - Dietary Specialties, Ener-G Foods and Med-Diet - to respond to questions. The questions were asked by families participating in the American Academy of Pediatrics survey on PKU treatment in the spring of '94. These same questions are asked by families involved with MSUD.

With appreciation for Virginia Schuett's efforts and the response of these companies, and with apologies to you who subscribe to the National PKU News, I am reprinting this article, also. I try to reprint only those articles of special interest to our subscribers. The PKU newsletter has many articles of interest. I think you would find it well worth the subscription fee for 3 issues a year. To subscribe contact:

National PKU News
6869 Woodlawn Ave, NE #116,
Seattle, WA 98115

Why are the foods so much more expensive than regular foods?
(The very frequent complaint was, "We cannot afford them, or we use much less than we should or want to.")

There are many reasons for these differences that make life difficult for all families (except those living in Connecticut and Massachusetts, where the foods are paid for by insurance). First, the number of people who require special low protein foods is very small. Food supplies are plentiful and inexpensive for the general retail market in the U.S. because there are so many people buying. Low protein foods are very expensive because there are so few people buying them.

To produce these foods, certain costs are fixed, despite the number of units produced. The result is that such "fixed costs" are spread over fewer units when the production runs are small. Among these fixed costs are costs of governmental regulations, such as complying with the new label regulations. (Recent costs associated with these regulations have been large enough to discourage one of the companies from producing a few less-popular low protein foods. Other costs such as labor, ingredients and packaging materials are more expensive per unit as the number of units produced decreases.

Ingredients for low protein foods also are usually more expensive than ingredients for more commonly available foods. The least expensive ingredients are those that low protein products cannot use, such as regular flour, eggs and powdered milk. Packaging, especially vacuum packaging required of some products, is very expensive. Such expensive packaging is necessary to increase shelf-life. For example, this is important for low protein bread bought in bulk and often eaten by only one person in the household.

Some families have asked why the U.S. cannot make its own pasta and other products to reduce the costs, instead of importing many of them. It is very difficult to find manufacturers who will make small quantities. Their equipment is geared to very large runs. For instance, most U.S. pasta companies run their machines 24 hours a day, 7 days a week. They are computer controlled for continuous operation. To ensure that there is no residue of "normal" pasta in the system, the extruders and dryers would have to be cleaned up. This could be very expensive just to make a one or two hour run of specialty pasta. (A four hour run on this equipment would produce nearly a whole year's supply of low protein pasta.) This is the major reason most low protein pasta comes from Italy. They have smaller producing units and also sell their products all over the world. This helps them get "economy of scale." The same is true for low protein bread, cookies, etc. There is a large start-up and cleanup expense associated with producing most food products. Small runs cannot be justified. So it is necessary to import many low protein foods, despite their higher cost.

Finally, shipping and handling costs are higher per package than they are for shipping entire truckloads of generally used foods over shorter distances. Dietary Specialties relates that, despite an average increase of 26% in UPS rates since 1990, their charges for shipping and handling are actually lower than they were four years ago. This is due to increased efficiencies in shipping and their desire to "keep things as affordable as possible."

Editor's note (Virginia Schuett): This attitude of wanting to serve families in the best way possible characterizes all three of the companies. I know this from years of communication with them. They are small companies that started out with an aim to help small numbers of people live better lives. They must make a small profit to stay in business, but they are not out to "gouge" you financially. It is my firm belief that they are all doing their best to keep prices down in the face of high production and shipping costs.

Why can't there be a bigger variety of prepared low protein foods? ("Cooking special meals for my child is a constant problem.")

It certainly would be nice to have a bigger variety of already- prepared low protein foods (those that would need heating only). Again, it is a matter of cost economies. Due to the small production runs and special packaging required, the cost would be $5.00 or more per serving. Are parents ready to pay this much and how many units could be expected to sell? The cost of developing new products is very high. The companies must be absolutely sure that the few consumers who require these foods will buy enough to justify the up-front cost.

If more states follow Connecticut and Massachusetts in getting laws passed requiring insurance coverage of low protein foods, the general use of low protein foods could increase significantly. This would make it much more feasible to develop new products. In countries such as Canada and England, these foods are paid for by the National Health Service. This stimulates consumption and almost guarantees a market. In those countries, many companies have entered the market because there is less risk, since they know that the product will be paid for by an outside agency.

Why can't the low protein foods be made to taste better?
(Also, "Why can't the foods have salt? Why can't the foods be geared just for PKU [MSUD] and not other conditions requiring low salt?")

The food companies are always trying to develop products that will look and taste like regular foods. As you know, it is a very big challenge to remove almost all the ingredients that contribute to the structure, "mouth-feel" and flavor of a food and still have the food resemble the original. Sometimes it's not possible.

The reason low protein foods are made to be low in salt is so they will be acceptable for renal diets (for kidney failure) where protein and salt restrictions are needed. Making a food that will suit two markets means the company does not have to make two separate products. The cost of these products is very dependent on the size of the production run, so it makes sense to increase the size of the run as much as possible. Also, it means avoiding the costs of carrying two separate inventories, separate packaging, etc. If the companies tried to produce foods tailored to only one group's needs, the flavor could be improved. But they would have an even harder time than they already have in attracting a manufacturer due to the very small volumes.

Why can't a low protein substitute for meat or cheese be developed?

The development of low protein meat or cheese-like foods has many technical barriers. It may not be possible. The chemical and textural properties of proteins are unique and very hard to duplicate. Also, they typically deteriorate rapidly. Refrigeration would be necessary throughout handing and delivery, which is very expensive. The large companies with the research facilities to develop such products are concentrating on developing high protein substitutes for meat and cheese. This is what the public wants.

Why can't the low protein foods be made available in grocery stores?
("It's very inconvenient and expensive to order large amounts through the mail.")

The goal of supermarkets is to sell to the consumer large amounts of products in the most efficient manner and to make a profit. There are so many products that the store has to limit the number of items it carries. To maximize profits, they stock only those items that will produce the highest profits per square foot of shelf space. Unfortunately, low protein products do not fit that profile. Low protein foods are usually not available in the grocery store because turnover is too low to justify their shelf space. To obtain shelf space, many supermarkets also require large "slotting fees," which small companies like Ener-G Foods, Med-Diet and Dietary Specialties cannot afford to pay. Also, they do not have an outside sales force, so it is not possible for them to travel around the country to persuade grocery stores to carry their foods.

Health food stores work with lower turnover items, but higher markups than supermarkets. Low protein foods often do not meet even the lower turnover requirements of health food stores. Drug stores and specialty food shops also are stocked by large distributors, not much different from those that distribute to the regular supermarket trade. This leaves mail order as the only avenue for small volume specialty products. It is the most efficient way of getting these products to consumers.

Several parents in different parts of the country have shown that it is possible to get low protein foods in certain grocery stores. But it is not an easy process. It takes the right combination of good will by the store, persistence by parents, and a large enough PKU clientele who will purchase the products. The companies, in fact, are happy to ship low protein foods to any retail outlet that will stock them. They would be glad to hear from subscribers about retail outlets that would buy their products on a regular basis.

Circumstances are but the trigger that call into action our faith. The same strong wind that capsizes one sail boat moves another to its destination. Faith thrives on the most adverse circumstances.


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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