Single mother pays for effective cancer treatment in Sweden – rejected in Denmark

Danish Lena Rosenkilde had run out of good treatment options for breast cancer when she chose to pay for treatment herself in Sweden. The treatment worked, the cancer is in remission, but the medicines committee in the Capital Region of Denmark still rejects that she can receive the treatment at home, as it is under assessment.

"I am so disappointed and frustrated that I cannot get the best possible treatment for my cancer here at home. Especially now that I have paid for treatment in Sweden, and it has had a really good effect on the disease," says Lena Rosenkilde, 57 and a single mother from Østerbro. She is one of the Danish breast cancer patients with the HER2-low subtype who cannot receive targeted treatment with the drug Enhertu (the ingredient is called T-DXd) in public Danish hospitals. This despite the fact that she has had a good effect from the medicine.

In January 2023, the European Medicines Agency EMA approved T-DXd for the treatment of HER2-low metastatic breast cancer, and many European countries now offer the treatment in the public hospital system. In Denmark, the application has been under consideration by the Medical Council since February 2023.

After a series of treatments with subsequent worsening of the disease, Lena Rosenkilde therefore chose in May 2023 to begin treatment with T-DXd at a clinic in Sweden at her own expense. She is almost halfway through the treatment, which has caused the cancer to shrink, confirms Lena's treating oncologist in Denmark to Onkologisk Tidsskrift.

Rejection by the Medicines Committee
Lena Rosenkilde's Danish oncologist was able to document that she already responded well to T-DXd after the third treatment in Sweden, but it still ended with a refusal from the regional drug committee in the Capital Region, says the oncologist. Lena Rosenkilde is very confused about that refusal.

“I don't understand at all why they refuse. I myself have invested time and money and it is proven that it works. It seems so heavy and bureaucratic. It must also be frustrating for the healthcare staff not to be able to offer the optimal treatment," she says.

She particularly adheres to the seventh principle in the Danish Parliament's seven principles for prioritizing hospital medicines. The seventh principle states, among other things, that "it must be possible, based on a specific medical assessment, to treat with medicines that are rejected for standard treatment".

Expensive treatment eats away at the legacy

Each of the six treatments in Sweden costs around DKK 45,000, and in addition there are also consultations, tests and transport. The total price thus runs into many hundreds of thousands of kroner, and this has consequences for both her and her loved ones when, like her, you are a single mother of a 20-year-old son and have a dog and a mortgage. If she can and wants to continue the self-paid treatment, she will have to have T-DXd six more times and then end up having paid between DKK 800,000 and 900,000, she says.

“My mother supports financially as much as she can, and I use my savings and more. I spend money I don't have," says Lena Rosenkilde, who has so far been allowed to continue her work at a temp agency to the extent she can.

She has used several means to raise money to continue.

"I have appeared in the media and the local newspaper to tell my story, and through this I have received crowdfunding. People have even sent me money on MobilePay to pay for the treatment," she says.

Even so, she has been forced to take on debt in order to be treated, which she finds difficult to see the reasonableness of.

“I have always paid my taxes, always worked, and I have never received financial help from the public. I have always managed financially, but I am not rich. I have a cooperative apartment in Østerbro, and I have had to take out a loan to be able to pay for treatment that others can get for free," she says.

A terrible message

In the summer of 2021, Lena Rosenkilde had her hip x-rayed due to pain. Here the doctors found out that the breast cancer she had been declared free of in December 2019 had returned with bone metastases in the hip, femur and back.

She was diagnosed with HER2-low estrogen receptor-positive (ER+) metastatic breast cancer – a diagnosis that came as a slap in the face after she had thought she was free of the disease a year and a half earlier. Not only for her, but also for her 20-year-old stay-at-home son:

“It was a hard message to receive, but it was terrible to have to call my son from the hospital and tell him that the cancer had come back and had almost eaten away my femur. It was a hard blow," says Lena Rosenkilde.

New treatment unavailable

She began several treatments, but each time the disease ended up spreading again. First, she received antihormonal treatment combined with a so-called CDK4/6 inhibitor and bone-strengthening medication. After three months, the disease developed again and spread to the liver. She then received another antihormone treatment, but again experienced worsening after two months.

Lena Rosenkilde was then told by the oncologists that there was a new treatment (T-DXd) which could be effective against HER2-low metastatic breast cancer, but which had not been approved in Denmark yet, and therefore they could not offer her the treatment .

The only option was to receive the treatment as part of a trial, and Lena Rosenkilde therefore agreed to participate in the DESTINY-Breast04 study, which investigated the effect of Enhertu on HER2-low metastatic breast cancer. However, when she joined the control group, she did not receive Enhertu, but the standard treatment capecitabine, and her disease worsened after two months. Next, she came on eribulin in March 2022, after which she went 14 months before the disease spread again.

It was there that Lena Rosenkilde chose to pay herself to get T-DXd in Sweden at the request of the oncologist at Rigshospitalet.

"It was very sad to learn that I could not get the treatment at the hospital in Denmark, but at the same time it was fantastic to know that there was a new and better treatment," she says.

Hoping for approval

It is estimated that between 45 and 55 percent of all breast cancers fall under the HER2-low category. HER2 (Human Epidermal Growth Factor Receptor 2) is a protein that can be found on the surface of some cancer cells. When there is a lot of this protein, we often talk about HER2-positive breast cancer. In these cases, specific treatments that target the HER2 protein can be used. HER2-low refers to a situation where there is a lower amount of the HER2 protein on the surface of the cancer cells.

Results from the DESTINY-Breast04 study last year showed a significant life-extending effect of Enhertu, and on that basis it was approved by the EMA and subsequently also in many European countries.

Now Lena Rosenkilde hopes that Denmark will soon follow suit, so that she can have her treatment covered going forward.

“I really hope something happens soon. I have considered whether we should just demonstrate outside the Medical Council's office to focus on the problem and get the process started," she says.

Despite her frustration, she hopes for the best and fights on.

“I have to be optimistic, because otherwise I lose hope, and I absolutely must not. I have to fight to get well, not least for my son.”