Hemophilia Patients Have a Choice in the Business of Their Disease

Look for the good reputation rather than the hard sell for medicines, supplies

Cazandra Campos-MacDonald avatar

by Cazandra Campos-MacDonald |

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An excellent sitcom in the late 1970s and early ’80s featured the character Herb Tarlek, played by Frank Bonner. Fans of “WKRP in Cincinnati” will remember how Tarlek, a sales manager, would do anything necessary to secure advertising for his radio station, such as soliciting ads from outrageous companies like Shady Hills Rest Home or Gone with the Wind Estates. His plaid suits, white belts, and white shoes made for a colorful character with questionable sales practices.

This relates to the bleeding disorders community in some unique ways. We’re closely connected with the healthcare industry, which includes doctors, nurses, and pharmacists, as well as specialty pharmacies and home infusion companies that provide patients with supplies, medications, and patient support.

Patients have the right to secure their desired company to provide services, but often this depends on insurance contracts. As a result, patient care coordinators and advocates are typically assigned to people with bleeding disorders to ensure they receive comprehensive care. These advocates have been essential for my sons, who have hemophilia.

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Newly diagnosed patients and their families have a massive amount of information to digest. Understanding the basics of their disorder is first and foremost. But there’s also the business aspect, which involves working with the companies that provide factor, medications, and supplies. Understanding how it all works takes time.

In the early days after the diagnosis of my oldest son, Julian, I remember being asked which company I wanted to use to get his factor and supplies. I looked at the clinic nurse blankly and pointed to the first provider on the list. I didn’t realize how crucial my selection would be. I’d yet to learn which questions I needed to ask.

While it’s true that specialty pharmacies and infusion companies are businesses, the ones that put patients before profits are the ones that retain their customers. These companies will be sure to employ patient advocates or care coordinators who understand the plight of those living with bleeding disorders. These individuals often develop relationships with the patient and their family to offer well-rounded care.

Ethical companies may also employ experts who can help patients research insurance benefits. This is extremely helpful, especially for those who are newly diagnosed.

How do patients learn about these companies? Many will meet representatives at national and local trade shows or family events. Companies will set up booths where the representatives provide educational materials and other information, often in the hopes that a patient will transfer to their services.

Most of these companies demonstrate ethical practices, allowing patients to make their own decisions about whether to sign up. The representatives want the best for the patient.

Unfortunately, as is the case in most industries, some representatives may use questionable tactics to encourage patients to sign up for their services. These are the Herb Tarleks.

If a company stands on its merits and provides outstanding customer service, it’s noticed in the community. Word will spread among patients and families, and the company’s good reputation will lead to patients signing on with their service. Often the best way to learn which companies provide ethical, top-quality service is by connecting with community members to learn from their personal experiences.

If you have an uncomfortable encounter with a Herb Tarlek, ask questions. Reach out to members of the community. Gather information from reputable sources and trusted friends. Patients should be empowered to make informed decisions.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


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