Software that supports your body should always respect your freedom

In July, users of the proprietary software app LibreLink, who live in the UK and use Apple devices, found that the app they depend on to monitor their blood sugar was not working anymore after the developer Abbott pushed an updated for the app. Monitoring glucose levels helps people with diabetes to see when their glucose level is too low or too high, which is a critical part of treatment.

"This equipment is supposed to save your life," David Burchell, who has type 1 diabetes, told the BBC. "And basically it broke, just showing a white screen, and I had a panic. ... I was left without an active test, other than the fingerprint testing. Pricking your finger a hundred times a week is a nightmare."

Burchell deleted the app and tried to reinstall it to fix the problem but said, "when trying to redownload it, they'd taken it off the app store so I couldn't download it [again]." Despite what its name may suggest, there is nothing libre about the LibreLink app. It's proprietary software, which means users must depend on the company to keep it running and to distribute it. With free software, Burchell would have had the freedom to run, copy, distribute, study, change, and improve the software himself, or he could have leaned on a community of developers and users to share and fix the software, and the old version of the software would have been available to revert the update.

Two months later, with Apple's update to iOS 17, users of the FreeStyle LibreLink and Libre 2 apps had reason again to fear that the software they rely on wouldn't work after updating their iPhones. This time, users all over the world were affected. In September, Abbott warned Apple users: "As part of the upcoming iOS 17 release, Apple is introducing StandBy Mode and Assistive Access Mode ... this release may impact your experience with the FreeStyle Libre 2 app, the FreeStyle LibreLink app, or the FreeStyle LibreLinkUp app. We recommend that you disable automatic operating system updates on the smartphone using the mentioned apps." This warning was made because StandBy Mode would sometimes prohibit time-sensitive notifications such as glucose alarms, and the Assistive Access Mode would impact sensor activation and alarm setting modification in the app.

It wasn't the first time, unfortunately, that an iOS update has left users of medical aids to their own devices. After updating their iPhones to iOS 15.4 in the spring of 2022, some users of hearing aids that connect to their phone via Bluetooth experienced problems pairing their hearing aids to the app on their phone. A user who goes by the pseudonym Bushness, for example, had the bass and treble sliders of the Resound brand hearing aid randomly bouncing up and down after updating the phone to iOS 15.4. Bushness discussed the issue with both Resound and Apple. The user tried various trouble shooting techniques but could not solve the issue. At some point, Bushness turned to the Apple forum for help, but nobody could recommend anything the person had not tried already. Bushness writes, "Somehow I hoped maybe the community had found something everyone else had missed." If Resound had instead chosen to free their software, however, then this would probably have been the case. But with proprietary software, nobody outside of the companies can look into the code and determine what's wrong. Proprietary software leaves the community powerless.

"It is only in the last few years that we have seen firmware updates pushed out to hearing aids. At this stage, many of the hearing aid brands provide occasional software updates to their hearing aids. It appears to primarily happen with Bluetooth hearing aids, the so-called 'Made For iPhone' hearing devices. The hearing aid brands don't necessarily tell us what the updates actually consist of, but they appear to be pushed out around the time that there are changes to iPhone operating systems. I would imagine that there probably is a direct relationship. ... Every time Apple changes its iPhones, there are connection issues with hearing aids," writes hearing aid blogger Goeffrey Cooling.

Resound eventually solved the issue Bushness and others were experiencing after the iOS 15.4 update. But it took weeks, and that illustrates how much users are at the mercy of the manufacturers when the hardware they need to go through daily life requires proprietary software in order to function.

What would happen if any of the Bluetooth hearing aids manufacturers decided not to provide updates for models of which the warranty expired? Well, if the software on these hearing aids were free (as in freedom), then the free software community could help keep it updated. But owners of medical aids that run proprietary software may be disappointed to find out that they must throw their devices away and buy a new pair, even if the hardware is otherwise still working well.

And a scenario where a company abandons service or updates to its users is not merely theoretical. This is the bitter reality faced by users of eye implants produced by Second Sight Medical Products since the company decided to abandon the technology in 2020 when facing the prospect of bankruptcy. Terry Byland, whose sight has been dependent on the first-generation Argus implant since 2004, says of his experience, "As long as nothing goes wrong, I'm fine. But if something does go wrong with it, well, I'm screwed. Because there's no way of getting it fixed." That's what also happened to Barbara Campbell, whose retinal implant suddenly stopped working when she was on a subway. This horrifying fate does not need to be a given for people like Terry and Barbara. If medical aid companies distributing software decided to release the software's source code under a free license such as the GNU General Public License v3.0 or later, then third party developers could help those people, but they haven't. It seems that, when the going gets tough, they'd rather leave their customers helpless.

Medical aids that run proprietary software not only leave you at the mercy of the companies when it comes to bugs and updates, but also when it comes to cybersecurity. Some governments are trying to fix safety problems with medical devices that run proprietary software by issuing laws like the PATCH Act, which requires manufacturers applying for approval for their devices with the US Food and Drug Administration "to demonstrate a reasonable assurance of safety and effectiveness throughout the lifecycle of the cyber device." The goal is to prevent scandals like those that happened in 2019 and 2021, when it turned out that pacemakers and insulin pumps made by Medtronic had vulnerabilities that exposed them to attacks. One of the major problems with proprietary software is that you have to trust the manufacturer to detect, communicate, and fix bugs like these. Legislation won't cure this shortcoming. With free software, you will most probably find someone who will try to crack the device and detect any vulnerability.

Free software in medical aids helps the patient, the environment, and the healthcare system. After all, the software in hearing aids, insulin pumps and pacemakers controls parts of our body. We should be allowed to control it. Software in medical aids has to respect our freedom! Free software can make the medical device last longer. The free software community can fix bugs and provide updates so that patients are not left at the mercy of the companies. Then, patients can choose to repair their device instead of throwing it away. Last but not least, long-time support can save the healthcare system and its patients lots of money.

Luckily, there is free software for hearing devices, such as the software developed by the Tympan project. The Open Community Platform for Hearing Aid Algorithm Research project, funded by the US National Institutes of Health, even developed a platform for real-time audio signal processing called openMHA, licensed under GNU Affero General Public License v3.0, to improve assistive hearing systems. Other medical aids, like an insulin pump, can also be run with free software thanks to projects like OpenAPS. Unfortunately, there is still a lack of free software for pacemakers. This area offers an opportunity for the free software community to contribute.

Take action!

It's up to us advocates of free software to inform the people around us of the issues with proprietary software in medical aids. Let's encourage our friends, parents, and grandparents to ask their doctor about the software in their medical devices and to choose and insist upon free software over proprietary software. You could start by sharing this article with the people who are near and dear to you.

Share your story

We understand that medical aids could be a sensitive topic, but if you would still like to share your story we invite you to email us at campaigns@fsf.org and share the following with us:

• why you use a medical aid with free software;
• your frustration with medical aids that run proprietary software; and/or
• how free software medical aids should improve to make your life easier.

Please specify in your email whether we may publish parts of your story, which we can do anonymously if you choose.

And if you don't mind talking about your experience with medical aids openly submit a session for LibrePlanet 2024.