Home » Posts tagged 'healthcare'

Tag Archives: healthcare

Why this cancer patient and advocate is walking away from X. (Hint: it’s not politics)

Posted on by

I’ve been living with and communicating about lung cancer for over 13 years. Since 2011 (the year I was diagnosed) I’ve been active in one or more online lung cancer patient groups. Since 2012, I’ve been blogging and on social media, connecting with the lung cancer community and learning/sharing developments in cancer research. In 2013, I cofounded #LCSM (lung cancer social media) Chat on Twitter and became a co-moderator of its weekly chats. As an active lung cancer patient research advocate, I’ve presented at national and international oncology conferences about using social media in the lung cancer community to improve education, clinical trials., and patient care.

Nowadays I spend most of my social media time in the private “ROS1 Positive (ROS1+) Cancer” Facebook group I cofounded (my ROS1+ cancer is a rarer form of lung cancer) and related online accounts. I know there are data security risks in sharing my cancer journey on public and private social media platforms, but it’s one of the most effective ways to reach other people who are living with lung cancer, especially for rarer subtypes.

All of that is to give you some background about my participation in social media. I’ve been very active online. I don’t sift through random posts about celebrities or debates about news events, but I have been known to spend hours online following developments in cancer research, posts from people attending oncology conferences, and discussions about cancer care from the patient perspective.

I used to do a lot of my research and outreach on Twitter. But due to evolving policies, algorithms, and accounts on X, I now spend almost no time on that platform. The Elon era substantially reduced its usefulness for this lung cancer patient advocate. I’ll try to explain why.

  1. While cancer social media has always had to contend with medical misinformation, it became significantly worse on X after moderation was cut back. I’ve also seen a dramatic increase in hateful comments, personal attacks, and anti-science sentiment. I don’t want to waste my time reading that stuff while trying to find the content I value.
  2. A blue checkmark on an account used to mean that account was owned by a validated organization, agency, or individual that had significant public impact. Patients could distinguish which accounts shared trusted, evidenced-based medical information . Now anyone can buy a blue checkmark, impersonate whoever they want, and spread medical disinformation that is not helpful or safe. While not all patients are successfully treated, the survival rate for lung cancer has increased significantly over the past decade. I’m not the only metastatic lung cancer patient who has survived for more than 10 years thanks to newer treatments like targeted therapies and immune checkpoint inhibitors. Yet I know people who died because they decided to forego an evidenced-based new cancer treatment in favor of some “cure” they found online that had only a few anonymous anecdotes to support it.
  3. When you blocked someone on Twitter, you could no longer see them and they could no longer see you. Now when you block someone on X for malicious behavior, they can still see your posts. I prefer to have more control over who sees my content.
  4. The platform terminated its free API (Application Programming Interface). This disrupted a lot of applications and websites that patient advocates and others used to interact with the platform and archive material from online chats. I have to spend more time to accomplish less.
  5. My X feed used to be filled with content from people I chose to follow. Now it’s filled with ads and people I never chose to follow that don’t interest me in the slightest. I can’t find the content I want, and those who follow me don’t see the content I generate. The only way I can find useful cancer-related content is by using hashtags like #lcsm, but even hashtag-curated content is greatly reduced because so many members of the cancer community have stopped posting on the platform.
  6. As of today, any content posted on X can be used to feed AI engines. While I’ve always known my posts on Twitter/X were publicly visible, it does bother me that the platform would deliberately hijack my content for their own uses without any acknowledgment or compensation.

So, there it is. I want to make a difference in the cancer space, and I have a limited amount of time and energy available to do it. Wading through uncurated content, hostile posts, and medical misinformation isn’t how I want to spend my days.

It’s sad to see the era of Twitter cancer communities end. Twitter was the one place where all stakeholders–patients, caregivers, advocates, clinicians, academic cancer centers, researchers, government agencies, industry, and the general public–could meet and exchange ideas on something that had life-and-death implications for so many (lung cancer is the #1 cancer killer). I hope someday another platform will attract enough participants to once again enable discussions across silos.

Pondering Resources for Affordable Healthcare

Posted on by | 2 Comments

I’ve been thinking about the US healthcare system thanks to a fascinating Facebook discussion with other Stanford Medicine X epatients.  Each of us are too familiar with the strengths and weaknesses of the US healthcare system and its mix of insurers: Medicare, employers, and private insurance companies.

My focus is this:  whatever healthcare system we decide to have in the US, we need to be able to pay for it.  The reality is that healthcare resources are not unlimited.

Whether or not a healthcare system is government run and/or devoted to serving the good of all people, the resources required to operate the healthcare system are driven by a free market.  Governments and nonprofits fund only a small percentage of healthcare research and development.  Healthcare providers still choose what type of work they want to do and where they want to live in order to enjoy life and perhaps support a family.  For-profit companies still choose when and how to develop and manufacture drugs and technology, which are required to provide treatment and services. The government can’t afford to fund and/or control all these resources completely (even if some think it should).

Even if healthcare were universally acknowledged (and it isn’t) to be a basic human right, any comprehensive healthcare system will still have to ration healthcare services such as time with providers, technology, and treatments.  As a metastatic cancer patient, I am acutely aware of the rising cost of cancer care.  The drug keeping me alive would cost about $10,000 per month if I weren’t getting it free in a clinical trial.  Even if we acknowledge that everyone deserves to receive the treatments they need, we simply can’t afford to treat everyone with leading edge medical care at those prices.

A good example of this quandary is the new drug Sovaldi, which offers a breakthrough and long-awaited cure for Hepatitis C.    More than 3.2 million people are chronically infected with hepatitis C virus in the US.  A cure with Sovaldi currently costs about $84,000 per person.  A little math shows curing all the US patients would cost around $270 billion–and the cure is not permanent (people can get reinfected with the virus). Having health insurance cover that $270 billion could break the healthcare system and put premiums out of reach for many, no matter whether the system is structured as private pay, single payer (government health system), or a mixture of the two. So who gets the treatment?

Other countries with single payer, government-funded health plans solve this problem by limiting services they cover.  For instance, the National Health Service in the UK will not pay for the lung cancer drug, crizotinib (approximately $10k/mo), even though the drug can give a small population of lung cancer patients years of quality time.  When the government must consider how to use its resources to provide the best care for the nation as a whole, they decided the cost to keep that small group of cancer patients alive for only a year or two is too high.  So people who can afford crizotinib in the UK pay privately, creating a two-tiered health system.

You can’t duck the issue by simply saying, “Get rid of the gatekeeper insurance companies.”  Because healthcare resources are limited, and provided by a market economy, SOMEONE or SOMETHING is going to be the gatekeeper.  Who should it be?  Insurance companies? Government?  Healthcare providers?  Medical societies? Pharmaceutical companies?  Companies that manufacture generic drugs?  Research institutions?  Individuals?

To me, the most important questions are these:

1. What guidelines should our healthcare system use to determine who gets healthcare, so that everyone is treated in the same fair and ethical manner?

2. Who gets to make and enforce those decisions?

You might want to learn more about these questions.  The next person who declares bankruptcy due to a health crisis such as a heart attack or metastatic cancer may be you.  Or your child.