As originally reported in Quest Qunam and Sure Scripts; for manydiseases, time is of the essence in terms of treatment. The patient’s health will deteriorate irreversibly thout treatment. However, with treatment, it may never progress to the more damaging stages. With this in mind, patients and their doctors prefer once they have devised an individualized treatment and have finalized the patients needs, the patient can receive that treatment as quickly as possible.

Survey on Rare Disease Drug Administration Delays

A new survey found the average wait time was eight days between diagnosis and beginning the drug on a sample of 500 patients. The survey was administered by Surescripts, a health information network company that provides e-prescriptions and technology. As a business that works to smooth this process for doctors and patients to speed up care, they see this as too much time for patients with progressive illnesses to wait. When it comes to standard medical care, doctors can send prescriptions straight to pharmacies which process requests within hours, so the patient goes straight from diagnosis in one straight motion.

Individualized Medications

Individualized medications are often used for complex, life-altering diseases. The specialization of the drugs makes access similarly complicated. For one, they are extremely costly, causing delays in decisions over distribution of costs. Their high cost also means they are handled with care, not commonly accessible for local pharmacists. They must also go through a string of approvals, passing through more hands. The various bureaucracies and access points create many sticky points where a file can get lost, forgotten, have errors.

Dr. Andrew Mellin, Vice President of Medical Informatics at Surescripts, tells the story of one patient whose neurologist prescribed her a vital treatment, yet she only received it four and a half months later. In the meantime, he describes patients like her are told to “hurry up and wait” while their health continues to deteriorate. This patients treatment was stuck due to bad communication between the various actors whose approvals were necessary to administer the drug. The neurologist, pharmacist, and medical specialists did not have a system to share her medical records and make their decisions accessible to the others, so her medical needs were never communicated. It is inefficiencies like this that could be simplified to speed up access.

The recent survey identifies the sticky points that delay patients from getting direct access to therapies. This included:

• Many forms and paperwork necessitate attention from nurses and medical staff. These burden busy employers to squeeze manual work into their full schedules.
• Hours spent receiving documentation, filling it in, receiving the pricing of the medication prescribed, finding the next appropriate bodies that can fill the unique medication, and pooling the many approvals to get the final authorization.

The Role of Technology

Mellin believes technology is the key to freeing up the system of some of the stops that burden the process. It can reduce the time and effort it takes to determine drug prices, find the most cost-effective solution takes time and expertise of health care professionals, and speed up prescription authorizations. With evolving technology connecting more branches of the medical field, rare diseases are having their needs simplified and thus more likely met. Continuing to investigate how these systems can become more efficient is vital to intercepting deterioration before it is too late.

What are your thoughts on efficient communication between medical staff? Share your stories, thoughts, and hopes with the Patient Worthy community!