funding – Life As I Know It

Metastatic Breast Cancer Awareness Day

October 13, 2025

Today is Metastatic Breast Cancer Awareness Day. We get this one day in breast cancer awareness month to shine a light on MBC.

1 in 3 of women cured of breast cancer
will be diagnosed as stage IV (MBC), which is terminal.

If we cure Stage IV, we cure all breast cancer.

In support of raising awareness for MBC, I went to Washington D.C. last week and participated in the METAvivor Stage IV Stampede and Summit.

The Summit included a day of education about MBC as well as how to advocate for various bills and funding.

Tuesday we marched (with police escort) from our hotel to the Capitol. We had a remembrance on the grass. I am holding the sign on the end, near the last “R”. We spoke the names of those who have died from MBC (and I included my aunt Jeanne Moretti as well as several other friends who have passed).

Policy advocates preparing to visit with Congressional staffers.

We met with staffers of our elected representatives. Staffers were taking meetings even though the House was not in session and the federal government was/is closed.

There were four “asks” that we made. I had fantastic interactions and felt like I was heard. I’ll share here what those asks were – if you feel compelled to share with friends/family or to reach out to your own elected representatives that would mean a lot.

Did you know that if you have MBC and need to stop working there is 5-month waiting period for Social Security Disability Insurance (SSDI) benefits to start? In addition, after that there is a 24-month waiting period before you are eligible for Medicare! I am one of the fortunate people who is living longer with my MBC diagnosis and can still work. Women with different subtypes have a prognosis of 2-3 years. During this time they can’t work and can’t get SSDI or Medicare. House bill 2048 “Metastatic Breast Cancer Access to Care Act” would eliminate the waiting period.
Did you know that where you live impacts how private insurance pays for MBC drugs? Private insurance treats medication received at a cancer center different from medication taken at home. Recall that I was on a pill (Ibrance) for the first 4 years. I live in a state where private insurance is required to pay for this (chemo) regardless of how it is given: intravenous or a pill. House bill 4101 (Cancer Drug Parity Act) would require private insurance to cover oral cancer drugs the same as IV drugs, regardless of what state you live in.
The U.S. is the largest funder in the world of cancer research. The administration’s budget zeroed out some breast cancer research programs and greatly reduced funding for the National Institutes of Health (NIH). Fortunately, Congress likes science – we asked them to provide the NIH with the same funding as last year and restore the breast cancer program in the Dept. of Defense.
Did you know there is a national database of incidence of cancer? It was created in the ‘70s during the Nixon administration. Unfortunately, it has not been updated since then. The Surveillance, Epidemiology and End Results (SEER) database provides information on cancer statistics which is used to inform where research dollars should go. It needs to be updated badly and I asked our reps to support funding for it. SEER help us understand where there is a high burden of cancer. It turns out that not every state is contributing to it. In addition, it does not include any recurrence of cancer. When I was first diagnosed, my information was put into SEER (LCIS and stage 0 DCIS breast cancer). However, there is no mechanism to update my information! According to SEER I was treated in 2009 and all is good with me. As you can see, the number of people with MBC or with any recurrent cancer are not counted which means we have no idea who is living with metastatic disease (unless you were diagnosed with MBC right away, which is only 6% of all MBC diagnoses).

That was a lot! If you are still reading, thank you. If you’d like more information about anything including language to send to your elected representatives, shoot me an email (charlevo@gmail.com).

I have one other cancer event this week and then I will take a break from cancer the rest of this month. I hope you are keeping balance in your life as well.

Onward!

1. Donate to research for MBC via METAvivor.

2. Find your Congressional representatives: House & Senate

Think Before You Pink – Support Research 🔬

October 1, 2025

When we moved to Colorado 16 years ago and I went to get my car license plates updated, I was asked if I wanted a “specialty plate”. There was one for breast cancer and I had been diagnosed only 6 months earlier.

“What does the extra $60 for the breast cancer specialty plate go toward?”

Clerk: “Um, I don’t know I think it’s just so you can raise awareness.”

“No thanks” – hard pass! They were collecting money that in no way went towards breast cancer at all.

Today is the start of Breast Cancer Awareness Month (BCAM) and you will see pink everywhere. I think it’s very important for people to be aware of cancer. However, at this point I’m pretty sure everyone in the U.S. is aware of breast cancer – how can you not be when you are confronted with pink at every turn!

Any business – or person – can “support” BCAM and do whatever they want with any money they might raise or collect.

Before you “round up” your groceries for BCAM or donate to a fundraiser, find out where that money is going.

If you are inclined to financially support BCAM, consider focusing on organizations that support scientific research of breast cancer. Scientific research is how we get treatments and how we understand how exactly breast cancer behaves. (Spoiler alert: we still don’t know how breast cancer behaves.)

Charity Navigator is a great resource to see how organizations use their funds (administrative costs vs. programming).

My favorite organizations focus on research mainly for stage 4 breast cancer (Metastatic Breast Cancer, MBC), they are listed below. Did you know?

Stage 4 (metastatic breast cancer MBC) is the ONLY breast cancer that kills.
30% of people “cured” from early stage breast cancer will eventually have a recurrence as Stage 4.
MBC is a terminal diagnosis.
If we cure stage 4, we cure everyone. Full stop.

If you’d at least share some of this information with one other person that would make me happy beyond belief.

We need more breast cancer research and especially stage 4. My life and the lives of my MBC friends depends on it.

METAvivor – donate on my page

Breast Cancer Research Foundation

Sikora Research Lab (donate or learn about a group I co-founded)

Lobular Breast Cancer Alliance

Cancer Drugs 💊 and Research 🔬

April 19, 2025

Hello friends and family! A quick update on things cancer-related, as you can expect from this blog!

My hip is fantastic. No pain at all. I’m up to walking around 4 miles a day. I can manage about an hour at a time. So happy about that and grateful for the skill of my orthopedic oncologist Dr. Lerman.

This coming Monday morning I will have treatment #21 of Enhertu. Recall this is a drug called an Anti-body Drug Conjugate (ADC) and is given intravenously every three weeks. Overall this drug has been good to me. It brought me back from the brink of a run-away cancer train early last year. Recently it’s not clear it’s been working so well as I mentioned in this post. Recall also that this drug was approved for my type of breast cancer (Her2-low) only in August 2022 – a full 3 years after I was diagnosed with MBC. I’m hoping for more drug discovery and approval so I can live longer!

I’m grateful that my side effects continue to be minimal. I’m on a blood thinner because it caused a blood clot last fall. I take Olanzapine nightly to control nausea and vomiting. I’m also grateful for the researchers that looked into this particular use of Enhertu. So very grateful!

This brings me to my second update. The future of cancer research in the U.S. is at risk. I know this first hand as a researcher I work with is looking at a loss of funding from NIH for his basic lobular breast cancer research. He shared some of the graphics and information shown here.

This chart shows the trends of NIH grant funding from 2015-2025 (source). As you can see, the amount of funding being distributed is far below previous years. The spring months (Feb-May) is when most federal awards are made based on the budget cycle.

The outlook for the Congressionally Directed Medical Research Programs (CDMRP) show significant cuts to cancer research. The March 14 Continuing Resolution has their budget reduced by 57%. You can see from this chart where some of the cuts were.

You may say, well ok, but there are a lot of other sources of funding for cancer research. There are other countries who will continue research – we don’t need to worry. Not really. As you can see from this chart, the NIH is BY FAR the largest funder of cancer research IN.THE.WORLD! The budget of the NIH is significantly larger than the next largest funder.

Ok, you say – what about foundations? They also support research. Yes, they do. The amount that they spend is a fraction of what the U.S. Federal government spends. In addition, the dollar amounts from foundations tend to be small. The motivation of foundations is to provide seed money to develop a proof of concept. Once the researcher does this they have some preliminary data to seek out a federal research grant to do the main research. The foundations take on the risk that federal funding won’t.

Well, Donna, thanks for giving me such uplifting news. Now I feel sad. Well, I can help you feel better about all of this by – please – contacting your federal elected representatives and urge them to restore funding to the NIH. You can find their contact info here. If you scroll down past the photos you can see a script to follow when you call.

All this being said, I remain cautiously optimistic that Americans will band together and convince our reps to fund cancer research. You never know who will get cancer next and having new treatment options is critical.

Onward!

I encountered this lovely little duck swimming away in the creek on my walk in Lafayette.

Script for federal reps:

Hi, my name is [Name] and I’m a constituent from [Your city].

I’m calling to urge [Name of representative] to oppose the recent devastating cuts to NIH funding and staffing. These cuts are already disrupting crucial research to treat diseases such as cancer [you could also add Alzheimers, diabetes, other diseases that impact you]. Hurting the NIH hurts everyone.

Thank you for your time and consideration.

p.s. If you leave a voicemail be sure to leave your full street address to ensure your call is counted.

p.p.s. – If you are nervous about talking to a person, call in the evening and leave a voice mail. It still counts.